MICA: Childhood Arthritis Response to Treatment consortium - partnership to define stratified medicine tools for childhood inflammatory arthritis
Lead Research Organisation:
UNIVERSITY COLLEGE LONDON
Department Name: Institute of Child Health
Abstract
Arthritis (swelling, pain and inflammation of the joints) affects 1 in 1000 children and young people. Arthritis of children and young people is called juvenile idiopathic arthritis (JIA). If JIA is not fully treated it causes severe pain, joint restriction swelling and stiffness, fatigue, poor growth, thinning of bones, time off school, reduced social and sporting activities and lost family life opportunities. JIA can lead to major disability that lasts well into adult life. There are many modern, powerful medicines that can be used to treat JIA better than before. However we do not yet have reliable and child-friendly tests that can predict which drug will work best for each child. Each of these drugs may also have serious side effects. At the moment, children and young people (and their families) have to wait after starting a new drug to see if it works, and whether any important side effects happen. If it does not work, or side effects crop up, only then are they allowed to try another. This "lets try it and see" approach takes time and exposes children to drugs which might not work well, yet often have important short and long term side effects.
Therefore there is an urgent need to develop ways that can help to predict how an individual child will respond to each drug, and so allow children with JIA to be treated with the most appropriate medicine. This approach is now known as 'precision' or 'stratified' medicine. Early control of the arthritis allows children to return to their education, as well as full sporting and family life activities, whilst continued control of arthritis prevents disability and avoids lost opportunities in the long-term.
At the moment, four major UK studies are collecting valuable data about response to treatment from children and young people with JIA across the country. Between them, these studies have a lot of data, both clinical as well as laboratory data, that can address this need. In this partnership we propose to bring these studies together to form a unique Consortium, called the Childhood Arthritis Response to Treatment Consortium (CHART). CHART will work with all the main national and international stakeholders including clinical and research collaborators, as well as families and patients who lives are affected by JIA. The overall aim of CHART is to directly improve clinical care for children with arthritis.
The key aspects of the work planned in the CHART Consortium are to :
1. Find out exactly what data and samples are already available in the four major UK studies of JIA
2. Design and agree a way to share all of the data, and bring the data together
3. Agree to collect data and samples for understanding response to treatment in the same way in the future, in order to speed up progress for all children with JIA
4. Give many more children and families the opportunity to contribute to these studies by including new centres and collaborators
The CHART Consortium, if established, will be one of the largest of its kind in the world. The CHART researchers will have the common goal of making treatment of JIA more individualised and precise, to help every child with arthritis return to a full normal life as quickly as possible.
Therefore there is an urgent need to develop ways that can help to predict how an individual child will respond to each drug, and so allow children with JIA to be treated with the most appropriate medicine. This approach is now known as 'precision' or 'stratified' medicine. Early control of the arthritis allows children to return to their education, as well as full sporting and family life activities, whilst continued control of arthritis prevents disability and avoids lost opportunities in the long-term.
At the moment, four major UK studies are collecting valuable data about response to treatment from children and young people with JIA across the country. Between them, these studies have a lot of data, both clinical as well as laboratory data, that can address this need. In this partnership we propose to bring these studies together to form a unique Consortium, called the Childhood Arthritis Response to Treatment Consortium (CHART). CHART will work with all the main national and international stakeholders including clinical and research collaborators, as well as families and patients who lives are affected by JIA. The overall aim of CHART is to directly improve clinical care for children with arthritis.
The key aspects of the work planned in the CHART Consortium are to :
1. Find out exactly what data and samples are already available in the four major UK studies of JIA
2. Design and agree a way to share all of the data, and bring the data together
3. Agree to collect data and samples for understanding response to treatment in the same way in the future, in order to speed up progress for all children with JIA
4. Give many more children and families the opportunity to contribute to these studies by including new centres and collaborators
The CHART Consortium, if established, will be one of the largest of its kind in the world. The CHART researchers will have the common goal of making treatment of JIA more individualised and precise, to help every child with arthritis return to a full normal life as quickly as possible.
Technical Summary
The primary goal of this partnership is to create the Childhood Arthritis Response to Treatment consortium (CHART), which aims to improve directly the clinical care of children with Juvenile idiopathic arthritis (JIA), by bringing together the major ongoing UK studies of JIA treatment response, and includes patients/families affected by JIA, as well as clinicians and researchers from across the UK, in order to develop a robust platform that will enable a stratified approach to treatment interventions in JIA.
Predictors of response to medication to inform treatment stratification are much needed in JIA. Unopposed joint inflammation in non-responsive patients is associated with increased disability, and creates personal / economic burden for many years into adult life. Currently no validated biomarkers exist that can identify children who will fail to respond, or whose disease is resistant to either methotrexate or biologic agents. CHART will bring together existing large JIA cohort studies, key stakeholders (scientists, clinicians, patients and families), and their collaborative infrastructure and networks, to work together.
The specific objectives of the CHART consortium, during this partnership are to:
1. Evaluate the clinical data and sample protocols in the currently available JIA cohort studies
2. Collate and align the data available within a common platform
3. Define and agree standardised 'core' clinical dataset, response outcome measures, sample protocols and IT for going forward
4. Expand and extend the existing cohorts by inclusion of cases from existing and new centres, using the agreed common standardised core data set and protocols
The creation of the Consortium, generation of the large combined JIA dataset in a single platform, and agreement of harmonised data and sample collection protocols, will ensure that the Consortium is ideally placed to obtain future funding to achieve our longterm goals of stratified medicine for JIA.
Predictors of response to medication to inform treatment stratification are much needed in JIA. Unopposed joint inflammation in non-responsive patients is associated with increased disability, and creates personal / economic burden for many years into adult life. Currently no validated biomarkers exist that can identify children who will fail to respond, or whose disease is resistant to either methotrexate or biologic agents. CHART will bring together existing large JIA cohort studies, key stakeholders (scientists, clinicians, patients and families), and their collaborative infrastructure and networks, to work together.
The specific objectives of the CHART consortium, during this partnership are to:
1. Evaluate the clinical data and sample protocols in the currently available JIA cohort studies
2. Collate and align the data available within a common platform
3. Define and agree standardised 'core' clinical dataset, response outcome measures, sample protocols and IT for going forward
4. Expand and extend the existing cohorts by inclusion of cases from existing and new centres, using the agreed common standardised core data set and protocols
The creation of the Consortium, generation of the large combined JIA dataset in a single platform, and agreement of harmonised data and sample collection protocols, will ensure that the Consortium is ideally placed to obtain future funding to achieve our longterm goals of stratified medicine for JIA.
Planned Impact
Several groups of stakeholders will benefit directly from this research, as follows:
Academia: the academic beneficiaries of this work will be those directly involved in the Consortium from 3 Universities, and importantly also all those who contribute to the Consortium (basic, translational and clinical researchers in the field of children and young people's arthritis) as well as other collaborators with a focus on stratified medicine, pharmacogenomics, life course research and e-health research.
While initially focused in engaging colleagues from right across the UK, in the future the Consortium will be well placed to partner with parallel efforts from across the world (Paediatric Rheumatology International Trials Organisation PRINTO, the Understanding Childhood Arthritis Network UCAN, the Childhood Arthritis & Rheumatology Research Alliance CARRA, Paediatric Rheumatology European Society, and Pharmachild, Long-term Pharmacovigilance for Adverse effects in Childhood arthritis focusing on Immune modulatory drugs Network). Benefit will come both through new knowledge gained, the accessibility of methods samples and data, through the study Steering Committee and extrapolation of new knowledge to related fields.
Public sector/NHS/policy makers: the efficient bringing together of studies to share data and work to propose methods with which to predict response to treatment in JIA, will benefit the NHS and reduce the economic burden of JIA to society. Accurate stratification of JIA patients using biomarkers would reduce uncontrolled disease, so enable HCPs to keep children out of hospital, reduce time of school and absence from work for parents caring for children with JIA. The availability of validated stratified medicine care pathways would greatly improve management of JIA so benefitting care providers, commissioners and policy makers.
Patients/public/schools: A central aim of CHART is to widen the inclusion of research studies on stratified medicine to all children with JIA, by generating simple, practical, and agreed protocols, that could be incorporated into routine clinical care. The uncertainty of response when a new drug is first tried causes worry and anxiety for many families, and serial failure of drugs in resistant cases represents a considerable added burden for parents dealing with the complexities of a chronically ill child. In addition better precision of treatment will reduce exposure to side effects from ineffective medications and reduce need for concomitant medications such as steroids, which leave long-term damage in growing children. With wide dissemination of results, all patients with JIA (the ~15000 in the UK and many more beyond) and their families would benefit from progress towards a stratified approach to treating JIA.
Charities and funders: several charities and industry partners have already funded the studies participating in this proposal, for several years. Notably, the contributions from Arthritis Research UK (CAPS, BCRD studies), SPARKS UK (CHARMS study) and Pfizer (BSPAR-Etanercept study), have all been significant. These agencies will benefit from the coherent approach gained by joining efforts between these studies and will be acknowledged in literature resulting from the project.
For the strategies and methods that will be used by the Consortium to deliver these impacts, please also see the Pathways to Impact statement.
Academia: the academic beneficiaries of this work will be those directly involved in the Consortium from 3 Universities, and importantly also all those who contribute to the Consortium (basic, translational and clinical researchers in the field of children and young people's arthritis) as well as other collaborators with a focus on stratified medicine, pharmacogenomics, life course research and e-health research.
While initially focused in engaging colleagues from right across the UK, in the future the Consortium will be well placed to partner with parallel efforts from across the world (Paediatric Rheumatology International Trials Organisation PRINTO, the Understanding Childhood Arthritis Network UCAN, the Childhood Arthritis & Rheumatology Research Alliance CARRA, Paediatric Rheumatology European Society, and Pharmachild, Long-term Pharmacovigilance for Adverse effects in Childhood arthritis focusing on Immune modulatory drugs Network). Benefit will come both through new knowledge gained, the accessibility of methods samples and data, through the study Steering Committee and extrapolation of new knowledge to related fields.
Public sector/NHS/policy makers: the efficient bringing together of studies to share data and work to propose methods with which to predict response to treatment in JIA, will benefit the NHS and reduce the economic burden of JIA to society. Accurate stratification of JIA patients using biomarkers would reduce uncontrolled disease, so enable HCPs to keep children out of hospital, reduce time of school and absence from work for parents caring for children with JIA. The availability of validated stratified medicine care pathways would greatly improve management of JIA so benefitting care providers, commissioners and policy makers.
Patients/public/schools: A central aim of CHART is to widen the inclusion of research studies on stratified medicine to all children with JIA, by generating simple, practical, and agreed protocols, that could be incorporated into routine clinical care. The uncertainty of response when a new drug is first tried causes worry and anxiety for many families, and serial failure of drugs in resistant cases represents a considerable added burden for parents dealing with the complexities of a chronically ill child. In addition better precision of treatment will reduce exposure to side effects from ineffective medications and reduce need for concomitant medications such as steroids, which leave long-term damage in growing children. With wide dissemination of results, all patients with JIA (the ~15000 in the UK and many more beyond) and their families would benefit from progress towards a stratified approach to treating JIA.
Charities and funders: several charities and industry partners have already funded the studies participating in this proposal, for several years. Notably, the contributions from Arthritis Research UK (CAPS, BCRD studies), SPARKS UK (CHARMS study) and Pfizer (BSPAR-Etanercept study), have all been significant. These agencies will benefit from the coherent approach gained by joining efforts between these studies and will be acknowledged in literature resulting from the project.
For the strategies and methods that will be used by the Consortium to deliver these impacts, please also see the Pathways to Impact statement.
Organisations
- UNIVERSITY COLLEGE LONDON (Lead Research Organisation)
- European Medicines Agency (Collaboration)
- The Hospital for Sick Children (SickKids) (Collaboration)
- Karolinska Institute (Collaboration)
- Addenbrooke's Hospital (Collaboration)
- General University Hospital in Prague (Collaboration)
- AbbVie Inc (Collaboration)
- Cincinnati Children's Hospital Medical Center (Collaboration)
- QUEEN'S UNIVERSITY BELFAST (Collaboration)
- UCAN (Understanding Childhood Arthritis Network) (Collaboration)
- British Society for Paediatric and Adolescent Rheumatology (BSPAR) (Collaboration)
- UNIVERSITY OF BIRMINGHAM (Collaboration)
- Stanford University (Collaboration)
- University Medical Center Utrecht (UMC) (Collaboration)
- Children's Chronic Arthritis Association (CCAA) (Collaboration)
- Utrecht University (Collaboration)
- Great Ormond Street Hospital Children's Charity (GOSHCC) (Collaboration)
- University Hospital of North Norway (Collaboration)
- Royal Wolverhampton Hospitals NHS Trust (Collaboration)
- HARVARD UNIVERSITY (Collaboration)
- Birmingham Children's Hospital (Collaboration)
- University of Alabama at Birmingham (Collaboration)
- UNIVERSITY HOSPITALS BRISTOL NHS FOUNDATION TRUST (Collaboration)
- Norfolk and Norwich University Hospital (Collaboration)
- University of Bristol (Collaboration)
- UNIVERSITY OF CAMBRIDGE (Collaboration)
- UNIVERSITY OF OXFORD (Collaboration)
- University of Alberta Hospital (Collaboration)
- City, University of London (Collaboration)
- Great Ormond Street Hospital (GOSH) (Collaboration)
- Johnson & Johnson (Collaboration)
- NOTTINGHAM UNIVERSITY HOSPITALS NHS TRUST (Collaboration)
- University of Toronto (Collaboration)
- Erasmus MC (Collaboration)
- Uppsala University (Collaboration)
- University College London Hospitals NHS Foundation Trust (Collaboration)
- UNIVERSITY OF MANCHESTER (Collaboration)
- QUEEN MARY UNIVERSITY OF LONDON (Collaboration)
- St James's University Hospital (Jimmy's) (Collaboration)
- Childhood Arthritis and Rheumatology Research Alliance (CARRA) (Collaboration)
- Duke University Medical Centre (Collaboration)
- Pfizer Ltd (Collaboration)
- VERSUS ARTHRITIS (Collaboration)
- University Hospital of Münster (Collaboration)
- Roche Pharmaceuticals (Collaboration)
- Giannina Gaslini Institute (Collaboration)
- UCL Business (Collaboration)
- UNIVERSITY OF LEEDS (Collaboration)
- University of Münster (Collaboration)
- Charité - University of Medicine Berlin (Collaboration)
- UNIVERSITY HOSPITAL SOUTHAMPTON NHS FOUNDATION TRUST (Collaboration)
- University College London (Collaboration)
- Charles University (Collaboration, Project Partner)
- Pediatric Rheumatology INternational Trials Organisation (PRINTO) (Collaboration)
- University of Genoa (Collaboration)
- Medical University of Lodz (Collaboration)
- Instituto Giannina Gaslini (Collaboration)
- William Harvey Research Foundation (Collaboration)
- University of Cologne (Collaboration)
- Pfizer Inc (Collaboration)
- Farr Institute of Health Informatics Research (Collaboration)
- Sparks Charity (Collaboration, Project Partner)
- Duke University (Collaboration)
- Leibniz Association (Collaboration)
- Barbara Ansell National Network for Adolescent Rheumatology (Collaboration)
- ALDER HEY CHILDREN'S NHS FOUNDATION TRUST (Collaboration)
- Sheffield Children's NHS Foundation Trust (Collaboration)
- F. Hoffmann-La Roche AG (Collaboration)
- UNIVERSITY OF LIVERPOOL (Collaboration)
- Murdoch Children's Research Institute (Collaboration)
- UCB Pharma (Collaboration)
- Royal Children's Hospital Melbourne (Collaboration)
- Childrens Chronic Arthritis Association (Project Partner)
- University Medical Center Utrecht (Project Partner)
- Alder Hey Childrens NHS Foundation Trust (Project Partner)
- Barbara Ansell National Network (BANNAR) (Project Partner)
- University of Birmingham (Project Partner)
- Norfolk & Norwich Uni Hosp (replaced) (Project Partner)
- Lancaster Associates Ltd (Project Partner)
- Janssen-Cilag Ltd (Project Partner)
- Queen's University of Belfast (Project Partner)
- Pfizer (Project Partner)
- Roche (UK) (Project Partner)
- British Soc for Paed & Adol Rheum BSPAR (Project Partner)
Publications
Acosta-Herrera M
(2019)
Genome-wide meta-analysis reveals shared new loci in systemic seropositive rheumatic diseases
in Annals of the Rheumatic Diseases
Arthur V
(2018)
IL1RN Variation Influences Both Disease Susceptibility and Response to Recombinant Human Interleukin-1 Receptor Antagonist Therapy in Systemic Juvenile Idiopathic Arthritis
in Arthritis & Rheumatology
Beesley R
(2024)
Development and implementation of 'A guide to PPIE - Early Integration into Research Proposals' in a multi-disciplinary consortium.
in Rheumatology (Oxford, England)
Beresford MW
(2018)
Paediatric rheumatology in 2017: Child-centred research is the key to progress.
in Nature reviews. Rheumatology
Beukelman T
(2015)
THU0531 The Initial Treatment of Systemic Juvenile Idiopathic Arthritis: An International Collaboration Among 7 Registries:
in Annals of the Rheumatic Diseases
Bolton C
(2022)
OA32 Minimally invasive, ultrasound-guided tissue biopsies of synovial tissue in children with Juvenile Idiopathic Arthritis for research: a feasibility study
in Rheumatology Advances in Practice
Burren OS
(2020)
Genetic feature engineering enables characterisation of shared risk factors in immune-mediated diseases.
in Genome medicine
| Title | CLUSTER Consortium Website |
| Description | Artistic public website developed for the CLUSTER Consortium to present information about the consortium to the public. Frequently updated with notices of news and events -https://www.clusterconsortium.org.uk/news-and-events/. Publications and research disseminated in an accessible way to the public, patients and parents including with engaging infographics https://www.clusterconsortium.org.uk/our-research/. Information on our Patient and Parent network as well as patient partners, The CLUSTER Consortium Champions, can also be found on our website along with support and information for families and young people. |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2023 |
| Impact | Provides information to general public, patients, families, researchers, industry and clinicians regarding the CLUSTER Consortium. Provides channel to contact the consortium leads. Provide channel to join mailing list for future events, workshops, focus groups and joining patient and parent network. |
| Description | Advisor for National COVID-19 guidance in Paediatric Rheumatology |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Impact | The advice reading and policy drafting that I co led , fed into policy of our National college : RCPCH, first on shielding of vulnerable children under the care of Paediatric Rheumatology then on advice on their return to school and vaccination. |
| URL | https://www.rcpch.ac.uk/resources/covid-19-management-children-hospital-and-non-hospitalised |
| Description | CAPTURE-JIA Patient Status Dataset: a consensus-derived core dataset to improve clinical care for children and young people with Juvenile Idiopathic Arthritis |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | The CAPTURE JIA dataset which worked very closely with the CHART data dictionary team and CHART co-Is received pilot study funding in 2016 to start a preliminary role out to UK centres. This dataset is being integrated into the electronic patient record system at Great Ormond Street Hospital, and it is hoped other centres will be able to follow suit in the near future. CAPTURE JIA presents a universal data collection tool designed in collaboration with multiple stakeholders from the clinical, research and patient domain, to be available across the UK for all JIA patients, for use in all clinics. This will not only impact the quality of clinical data undertaken and standardize services in this way, but it is hoped will impact the efficiency and availability of the key data items necessary for robust JIA research. |
| URL | http://www.hra.nhs.uk/news/research-summaries/capture-jia/ |
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| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Description | Development of informed consent and SOP documents as the basis for new researchers. |
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| Policy Influence Type | Influenced training of practitioners or researchers |
| URL | https://www.gosh.nhs.uk/our-research/our-research-infrastructure/nihr-gosh-brc/support-researchers/r... |
| Description | I am a Paediatric representative on Independent Advisory Group established by Deputy CMO England to advise on use of neutralising monoclonal antibodies & anti-viral drugs for vulnerable persons |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Impact | Guidance on which patients should lie considered eligible for use of viral neutralising anti viral monoclonal antibody therapy or oterh new treatments of SARSCov2 , or COVID-19. see https://www.gov.uk/government/publications/higher-risk-patients-eligible-for-covid-19-treatments-independent-advisory-group-report/defining-the-highest-risk-clinical-subgroups-upon-community-infection-with-sars-cov-2-when-considering-the-use-of-neutralising-monoclonal-antibodies https://www.rcpch.ac.uk/resources/covid-19-management-children-hospital-and-non-hospitalised https://www.rheumatology.org.uk/news/details/Easy-access-COVID-19-resources and |
| URL | https://www.gov.uk/government/publications/higher-risk-patients-eligible-for-covid-19-treatments-ind... |
| Description | MRC Rare Diseases Research Steering Group |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | Member of RCPCH Advisory group on children with chronic conditions and response to COVID |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | Providing guidance on shielding, vaccination and other issues for children with chronic conditions during the COVD pandemic. |
| Description | PRES 2021 Scientific Congress Programme committee |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | previous chair now advisory on PRES 2021 Scientific Congress Programme committee |
| URL | https://www.pres.eu/pres2021/index.html |
| Description | Served as part of expert panel for Healthcare Quality Improvement Partnership (HQIP) on JIA |
| Geographic Reach | National |
| Policy Influence Type | Membership of a guideline committee |
| URL | http://www.hqip.org.uk |
| Description | Translation of the MRP biomarker test into real clinical practice |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | After piloting this test in a cohort of 190 children this new biomarker test was officially introduced into clinical practice at GOSH in Autumn 2016. Development of the supporting infrastructure to enable roll out to other NHS centres in now in progress. |
| Description | Utrecht Translational Medicine Summer School |
| Geographic Reach | Europe |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | An intense training course for high flying early career researchers to provide training and skills in collaboration and impactful research. |
| URL | https://utrechtsummerschool.nl/courses/life-sciences/translational-medicine-doing-the-right-research... |
| Description | ARUK Clinical Studies grant - BCRD extension 2015 |
| Amount | £583,278 (GBP) |
| Organisation | Versus Arthritis |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 01/2015 |
| End | 12/2019 |
| Description | ARUK Programme Grant: " Measuring T cell activation thresholds and their role in susceptibility to autoimmune joint disease" |
| Amount | £428,955 (GBP) |
| Funding ID | 21147 |
| Organisation | Versus Arthritis |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 01/2016 |
| End | 01/2019 |
| Description | Arthritis Research UK Centre for Adolescent Rheumatology |
| Amount | £2,113,790 (GBP) |
| Organisation | Versus Arthritis |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 03/2018 |
| End | 03/2023 |
| Description | Arthritis Research UK Core Support Grant (Core Datasets in Paediatric Rheumatology) |
| Amount | £33,913 (GBP) |
| Funding ID | 20877 |
| Organisation | Versus Arthritis |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 08/2014 |
| End | 12/2015 |
| Description | Arthritis Research UK Core Support Grants (Generic roll-out of the ARUK catalogue of studies (ARCAT)) |
| Amount | £15,500 (GBP) |
| Funding ID | 20878 |
| Organisation | Versus Arthritis |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 06/2014 |
| End | 12/2015 |
| Description | Arthritis Research UK Project Grant - LW Co-I "Improving delivery of care and self-management for young people with arthritis" |
| Amount | £152,186 (GBP) |
| Funding ID | 21411 |
| Organisation | Versus Arthritis |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 11/2016 |
| End | 10/2019 |
| Description | Arthritis Research UK clinical research fellowship (SS-Developing a combined clinical genetic prediction model for methotrexate non-response in JIA) |
| Amount | £158,331 (GBP) |
| Funding ID | 21016 |
| Organisation | Versus Arthritis |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 08/2015 |
| End | 10/2017 |
| Description | CLUSTER JIA Stratified Medicine Consortium Grant |
| Amount | £4,048,555 (GBP) |
| Funding ID | MR/R013926/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 06/2018 |
| End | 06/2023 |
| Description | Central Manchester Foundation Trust Research & Innovation Division Strategic Investment Scheme (Understanding Treatment Response in JIA using Pathway-Based Genetic Analysis) |
| Amount | £25,000 (GBP) |
| Funding ID | 102268 |
| Organisation | Manchester University NHS Foundation Trust |
| Sector | Public |
| Country | United Kingdom |
| Start | 04/2014 |
| End | 05/2015 |
| Description | Defining the Cellular Basis of Disease Persistence in Juvenile Idiopathic Arthritis |
| Amount | £299,114 (GBP) |
| Funding ID | 22710 |
| Organisation | Versus Arthritis |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 07/2021 |
| End | 08/2024 |
| Description | Defining the cellular basis of joint and gut inflammation |
| Amount | £204,284 (GBP) |
| Organisation | The Kennedy Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 11/2020 |
| End | 10/2022 |
| Description | FOREUM Grant KH Co-I |
| Amount | € 300,000 (EUR) |
| Organisation | Foreum |
| Sector | Charity/Non Profit |
| Country | Switzerland |
| Start | 06/2017 |
| End | 06/2020 |
| Description | GOSH CC PERSONALISED MEDICINE FOR CHILDREN WITH ARTHRITIS AND MYOSITIS: FROM LABORATORY TO CLINIC |
| Amount | £250,000 (GBP) |
| Funding ID | V2517 |
| Organisation | Great Ormond Street Hospital Children's Charity (GOSHCC) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 03/2016 |
| End | 03/2019 |
| Description | Great Ormond Street Biomedical Research Centre |
| Amount | £37,005,790 (GBP) |
| Organisation | University of Leicester |
| Department | NIHR Biomedical Research Centre |
| Sector | Hospitals |
| Country | United Kingdom |
| Start | 03/2017 |
| End | 03/2022 |
| Description | Identifying an immune 'signature' associated with lack of response to treatment in patients with childhood arthritis |
| Amount | £123,123 (GBP) |
| Organisation | Great Ormond Street Hospital (GOSH) |
| Sector | Hospitals |
| Country | United Kingdom |
| Start | 07/2020 |
| End | 07/2023 |
| Description | Improving delivery of care and self management for young people with arthritis |
| Amount | £152,186 (GBP) |
| Funding ID | 21411 |
| Organisation | Versus Arthritis |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 11/2016 |
| End | 10/2019 |
| Description | JGW Patterson Project Award - WT Co-I "CAPTURE JIA - Achieving Uniform and Optimal Data Collection to Improve Patient Care for Children and Young People with JIA" |
| Amount | £52,144 (GBP) |
| Organisation | The JGW Patterson Foundation |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 04/2016 |
| End | 12/2018 |
| Description | MRC Stratified Medicine Call CLUSTER JIA Consortium Building Award |
| Amount | £15,000 (GBP) |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2017 |
| End | 06/2017 |
| Description | NIHR Biomedical Research Centre Award Manchester - WT Deputy for MusculoSkeletal theme |
| Amount | £28,500,000 (GBP) |
| Organisation | National Institute for Health Research |
| Department | NIHR Biomedical Research Centre |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2017 |
| End | 03/2022 |
| Description | NIHR Biomedical Research Centre Funding at GOSH, LW Deputy Director of full grant and PI/ Lead for Rare Disease Cohorts budget |
| Amount | £37,005,790 (GBP) |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2017 |
| End | 04/2022 |
| Description | NIHR Senior Investigator Award |
| Amount | £60,000 (GBP) |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2017 |
| End | 03/2021 |
| Description | Pfizer |
| Amount | £50,000 (GBP) |
| Organisation | Pfizer Ltd |
| Sector | Private |
| Country | United Kingdom |
| Start | 12/2016 |
| End | 12/2017 |
| Description | SPARKS Project Grant 2017 |
| Amount | £136,870 (GBP) |
| Funding ID | 17ICH02 |
| Organisation | Sparks Charity |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 05/2017 |
| End | 06/2019 |
| Description | UCAN-U co-host International Strat Medicine Meeting grant (CHART March 16) |
| Amount | € 10,000 (EUR) |
| Organisation | University Medical Center Utrecht (UMC) |
| Sector | Academic/University |
| Country | Netherlands |
| Start | 01/2016 |
| End | 09/2016 |
| Description | Unlock PsA: Stratifying the Impact of Psoriatic Arthritis in Children and Adults |
| Amount | £850,205 (GBP) |
| Funding ID | MR/W027151/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2022 |
| End | 08/2027 |
| Description | Unrestricted Educational Grant , Abbvie Inc , for CHART - UCANU International Meeting March 16 |
| Amount | £3,000 (GBP) |
| Funding ID | AXHUR152176 |
| Organisation | AbbVie Inc |
| Sector | Private |
| Country | United States |
| Start | 02/2016 |
| End | 09/2016 |
| Description | Vienna Medical Academy Clinical Fellowship - WT/KH supervisors "Predictors of Treatment Response in JIA" |
| Amount | £24,176 (GBP) |
| Organisation | Vienna Medical Academy |
| Sector | Academic/University |
| Country | Austria |
| Start | 08/2016 |
| End | 02/2017 |
| Description | Young people's Opinions Underpinning Rheumatology Research-YOURR project |
| Amount | £49,162 (GBP) |
| Funding ID | 2BUQ DCOL (513 689) |
| Organisation | Barbara Ansell National Network for Adolescent Rheumatology |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 05/2014 |
| End | 05/2015 |
| Description | Young people's Opinions Underpinning Rheumatology Research-YOURR project, extension |
| Amount | £17,651 (GBP) |
| Funding ID | 2BUQ DCOL (513 689) |
| Organisation | Barbara Ansell National Network for Adolescent Rheumatology |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 11/2015 |
| End | 12/2018 |
| Title | CHARMS juvenile idiopathic arthritis (JIA) Family Website (WEBPARC) |
| Description | Through the SPARKS CHARMS study we designed, tested and refined a detailed website about JIA for families. The texts and videos were extensively reviewed by parents and children and then revised according to feedback . Funding was awarded in Jan 2016 ( NIHR) to test this website across UK centres on families with a child with a new diagnosis of JIA |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2016 |
| Provided To Others? | Yes |
| Impact | If we are successful in our NIHR grant funding this tool will be directly tested in an RCT : see below Title: Assessment of a web-based tool for parents of children with Juvenile Idiopathic Arthritis (JIA) coupled with standard care versus standard care alone: a randomised controlled trial. PI- Professor S Newman (awarded NIHR funding and opened for recruitment 2016.) |
| URL | https://ukctg.nihr.ac.uk/trials/trial-details/trial-details?trialNumber=ISRCTN13159730 |
| Title | CHART Consortium SOP Catalogue (updated for 2016/7) |
| Description | We have detailed and catalogued methods and SOPs in use in the CHART Consortium. We then created a CHART Template set of protocols to be made freely available, with over arching guidelines and principle of use, to be made freely available for collaborators. This resource will be used in the planned International 2016 meeting (March 2016) |
| Type Of Material | Technology assay or reagent |
| Year Produced | 2016 |
| Provided To Others? | Yes |
| Impact | Harmonisation at International level of sample SOPs is now taking place , enabling more rapid and easy sharing of samples and data in the future. Updated for 2016/7: International SOPs for all the following areas were developed and finalized in March 2016. These were then ratified at the UCAN-U/CHART JIA Stratified Medicine meeting and made available total delegates and their research groups afterwards. General SOP CHART_SOP_0: General Principles Sample Collection and Postage SOPs CHART_SOP_1.1: Collection of saliva for DNA CHART_SOP_2.1: Collection of venous blood for genomic DNA CHART_SOP_3.1: Collection of venous blood for serum CHART_SOP_4.1: Collection of venous blood for plasma CHART_SOP_5.1: Collection of venous blood in heparin for peripheral blood mononuclear cells (PBMC) Lab processing SOPs CHART_SOP_1.2: preparation of gDNA from saliva CHART_SOP_2.2: preparation of gDNA from venous blood CHART_SOP_3.2: preparation of serum from venous blood CHART_SOP_4.2: preparation of plasma from venous blood CHART_SOP_5.2: preparation of PBMC from venous blood Sample collection Forms CHART_FORM_1.3: Collection of saliva for DNA CHART_FORM_2.3: Collection of venous blood for genomic DNA CHART_FORM_3.3: Collection of venous blood for serum CHART_FORM_4.3: Collection of venous blood for plasma CHART_FORM_5.3: Collection of venous blood in heparin for peripheral blood mononuclear cells (PBMC) |
| Title | SPARKS CHARMS database |
| Description | Cohort of 1250 patients with JIA in whom data and biological material has been collected , with information about response to treatment |
| Type Of Material | Biological samples |
| Year Produced | 2008 |
| Provided To Others? | Yes |
| Impact | Many papers- see publications list; further funding ; proposal for a UK wide Consortium ( CHART) |
| Title | The CHART Consortium Dataset (2015 - 2019) |
| Description | Harmonisation and alignment of clinical datasets form existing JAI Cohort studies across the UK The comparison, documentation, data dictionary detailing and alignment of clinical data from across the 4 studies, (CAPS CHARMS BSPAR ETN and BCRD) was a key goal of this grant and has been achieved . This has led to a powerful data set of JIA cases with data relevant to stratified medicine. This is now a large and invaluable resource of data relating to almost 4000 children with JIA from across the UK. |
| Type Of Material | Model of mechanisms or symptoms - human |
| Year Produced | 2015 |
| Provided To Others? | No |
| Impact | On the strength of this resource a prestigious Clincial Fellowship ( see ARUK Fellowship SS) has been awarded. The clinical data set on approx 4000 cases is now being used to analyse a large genotyping data set as well as in other collaborations ( eg Prof A Morgan Leeds) Update for 2016/7 submission: The combined CHART clinical data set now includes ~5500 JIA cases. This data has been the main resource for a clinical fellowship (Dr. Sunil Sampath, listed under partners/collaborations) for MTX NR modelling. |
| Title | Translation of the MRP biomarker test into real clinical practice |
| Description | This ELISA assay has now been established at GOSH for use in clinical care of children with JIA. Use of the test helps doctors predict which children will respond well to medication and which will not ,as well as a advice the families on the risk of flare of arthritis if they stop medication, once clinical remission has been reached. |
| Type Of Material | Technology assay or reagent |
| Year Produced | 2015 |
| Provided To Others? | Yes |
| Impact | This test was originally introduced to the rheumatology team at GOSH as a research assay. 190 children in total entered this research cohort. In Autumn 2016 the test transferred to an official clinic test. We are currently developing the means to roll out this test to other UK centres. |
| Title | CHARMS Database (updated for 2016/7) |
| Description | The CHARMS database was created in 2007 and is held in an Access 2007 - 2010 file. The database contains all the study data for each of the CHARMS patients (n=1220 as of 10/03/2015, of which 60% are GOSH patients) including: clinical data and core outcome variables from 0 and 6 month time-points, patient identifiable data, concomitant medication data including joint injections and IV pulses, psychology questionnaires (where applicable), and data regarding sample collection, content, volume, use and storage. Recently a support contract has been set up for the CHARMS database with external company Dataphiles (subject to all IG/Data protection requirements being met) with the idea that the database can be supported and now developed to becoming more up to date. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2010 |
| Provided To Others? | Yes |
| Impact | 1. Created a data platform to generate evidence for new biomarkers with which to predict response to treatment 2. Allowed data-sharing between UCL and Manchester to perform the largest GWAS on Arthritis to date 3. Provides multidisciplinary data for all CHARMS publications - psychological, immunological and biological update for 2016/7 4. Data warehouse created which enables data queries to be run much quicker an more efficiently 5. CHARMS database was moved into the UCL Data Safe Haven in Summer 2016, in compliance with the highest level of European data security standards |
| Title | CHART Consortium TRANSMART Data Platform (updated for 2016/7) |
| Description | The CHART Consortium (started in Aug 2014) brings together 4 JIA studies in the UK (BCRD, BSPAR-ETN, CAPS,CHARMS) and their respective PI's, research teams, partners and funders to build a model for data sharing across the cohorts (totalling over 5500 unique JIA patients as of early 2017) which will enable greater power in analyses and research. |
| Type Of Material | Data analysis technique |
| Provided To Others? | No |
| Impact | The CHART Consortium has carried out in a detailed data analysis across the 4 studies to confirm how much the studies can share, based on their current databases, sample SOPs and collection forms i.e. can data items be mapped to each other across the 4 studies, and if not, could they be? This work has enabled us to lead the production of a comprehensive data dictionary for JIA research studies, to include a 'gold standard' suggestion for how to most effectively collect each data item. This is a standard which we could then propose to new JIA studies in the future (once the consortium is in a position to expand) to enable even greater data sharing across research studies. The key aspiration is for all children with JIA in the UK to have the opportunity to be a part of this consortium. The CHART Consortium is also developing models for the combination/harmonization of the 4 current studies - i.e. options of developing a joint data platform etc. The CHART consortium has begun entering pilot datasets into a TRANSMART platform for preliminary script testing. Work to upload datasets from the three studies for alignment within TRANSMART is now underway, and is almost complete for 3/4 studies. This work provided key data and information to a National initiative, CAPTURE JIA ( see collaborations) , part of a HQIP project, which aims to generate a minimal core dataset for use in clinical practice in JIA. |
| Title | CHART consortium TRANSMART Data Platform (updated 2017/18) |
| Description | The CHART consortium has successfully brought together the full studies representing >5500 unique JIA cases using the TRANSMART platform to allow for data sharing across the 4 cohorts which has enabled greater power in analyses and research. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2017 |
| Provided To Others? | No |
| Impact | Having agreed the core data items and definition of each, harmonisation has proceeded and script written for harmonisation to enable loading of data into TRANSMART. The TRANSMART JIA platform has been built in the MRC-eMedlab environment and a test large dataset has been cleaned and lifted into the pilot platform. |
| Title | CLUSTER Consortium TranSMART Data Warehouse Platform |
| Description | The CLUSTER Consortium will collate data from CHARMS, CAPS, JIA Pathogenesis, BSPAR-ETN and BCRD Registers, SYCAMORE and APTITUDE and store pseudonymised and curated data to the TranSMART Data Warehouse. Public JIA datasets will also be curated, and enriched with addition clinical data when agreed with the PI. Secure data sharing can be allowed through TranSMART, available on request. The platform also enables users to perform ad hoc analysis to investigate specific hypotheses in the data |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | TranSMART will allow cleaning, consistency of data entry and control of data. Platform will allow sharing and usage for analyses and research development from all CLUSTER consortium institutes and partners. Access to the database is available on request. Update 2023: TranSMART enables consistency and control of the data. Building relationships with institutions to share and enrich their public datasets . Enabling sustainability through documentation, such as data dictionaries, data catalogue and analysis metadata. Update 2024 : we have published the process to harmonising the clinical data sets see DOI below and: here https://ped-rheum.biomedcentral.com/articles/10.1186/s12969-023-00839-2 |
| URL | https://www.clusterconsortium.org.uk/researchers/cluster-datasets-and-data-access/ |
| Title | The MAPJAG Study data set |
| Description | Clinical data set for collection to inform study of tissue site ( SYnovium ) in childhood arthritis |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | No |
| Impact | Not yet published but will be once the study open and up and running |
| Description | ARUK Clinical Research Fellowship - Dr Sunil Sampath (updated for 2016/7) |
| Organisation | University of Manchester |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Providing CHARMS data on 1500 patients to be used in analysis. MTA and DTA created and put into place for this. Project supported by PI's of CHART - Prof Wendy Thomson and Prof Lucy Wedderburn. |
| Collaborator Contribution | Clinical Fellowship awarded to investigate mechanisms and predictors of response to treatment in JIA across the treatment care pathway. The outputs of the proposed research project are to define genetic predictors of response to treatment in JIA and also integrate clinical, genetic data to define algorithms of response to treatment, Fellowship will add important capacity to the joint efforts of Prof Lucy Wedderburn and Prof Wendy Thomson as representatives of both CAPS and CHARMS, and CHART, in the field of stratified medicine for JIA. |
| Impact | For 2015/6 submission: -Mapping the overlap of patients across the 4 CHART studies - BCRD/BSPAR-ET/CAPS/CHARMS to demonstrate the need for cross-study data sharing, and the statistical power this would provide ; over 3000 unique JIA patients across the 4 with data/samples attached, which can be utilised together. For 2016/7 submission: Investigation of the clinical and genetic predictors of non-response to methotrexate in a large dataset has been possible due to the CHART consortium. Clinical and genetic factors have been combined in a prediction model to show that this can improve the accuracy of predicting non-response. Cross validation within the JIA dataset and validation of the genetic factors in a RA-methotrexate cohort is currently underway. |
| Start Year | 2015 |
| Description | BCRD Study |
| Organisation | University of Liverpool |
| Department | Department of Women's and Children's Health |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The CHART study has enabled close working and inter-study collaboration between BCRD (Biologics for Child with Rheumatic Diseases study) and the other CHART partner studies. Data , samples knowledge expertise and further funding initiatives are shared. |
| Collaborator Contribution | BCRD is a longitudinal safety cohort study focus on JIA patients treated with biologics other than Etanercept. The PI is Dr Kimme Hyrich (also CHART co-PI.) The study uses a control group of methotrexate patients and collates follow up data from baseline on an annual basis. This data is shareable between the studies as part of overarching CHART research goals. The BCRD study involves circa. 40 UK sites and 852 total patients to date (10.03.16.) |
| Impact | - CHART publications - The knowledge and expertise from BCRD and BCRD PIs in CHART have been in valuable to the work to harmonise the 4 studies in CHART and to create data dictionary/CAPTURE JIA projects |
| Start Year | 2014 |
| Description | BCRD Study |
| Organisation | University of Manchester |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The CHART study has enabled close working and inter-study collaboration between BCRD (Biologics for Child with Rheumatic Diseases study) and the other CHART partner studies. Data , samples knowledge expertise and further funding initiatives are shared. |
| Collaborator Contribution | BCRD is a longitudinal safety cohort study focus on JIA patients treated with biologics other than Etanercept. The PI is Dr Kimme Hyrich (also CHART co-PI.) The study uses a control group of methotrexate patients and collates follow up data from baseline on an annual basis. This data is shareable between the studies as part of overarching CHART research goals. The BCRD study involves circa. 40 UK sites and 852 total patients to date (10.03.16.) |
| Impact | - CHART publications - The knowledge and expertise from BCRD and BCRD PIs in CHART have been in valuable to the work to harmonise the 4 studies in CHART and to create data dictionary/CAPTURE JIA projects |
| Start Year | 2014 |
| Description | BSPAR-ETN study |
| Organisation | University of Manchester |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Inter-study collaboration BSPAR-ETN , BCRD and CHARMS under CHART Consortium. Data and samples are shared. |
| Collaborator Contribution | BSPAR-ETN is a longitudinal safety cohort study focus on JIA patients treated with etanercept. The PI is Dr Kimme Hyrich (also Co-PI CHART) The study uses a control group of methotrexate patients and collates follow up data from baseline on an annual basis. This data is shareable between the studies as part of overarching CHART research goals.The BSPAR-etn study involves circa.40 UK sites and 1474 total patients to date (10.03.16.) |
| Impact | - CHART publications listed - The knowledge and expertise from BSPAR ETN and its PIs in CHART have been in valuable to the work to harmonise the 4 studies in CHART and to create data dictionary/CAPTURE JIA projects |
| Start Year | 2014 |
| Description | CAPS study |
| Organisation | University of Manchester |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Inter-study collaboration between CHARMS and CAPS, and as part of the CHART consortium. Data and samples , analysis, expertise and research tools are shared between studies towards common goals. |
| Collaborator Contribution | CAPS (Childhood Arthritis Prospective Study) is a longitudinal, multi-disciplinary cohort study recruiting newly diagnosed JIA patients and collating information from baseline on an annual basis. The PI is Prof. Wendy Thomson (also CHART Co-PI) CAPS collates information on drug changes and responses, including MTX patients. This data and connected samples is shared assist with CHART and CHARMS research publications and aims. CAPS involves 7 UK centres, and has 1551 total patients to date (10.03.16.) |
| Impact | - publications listed as CHART, CHARMS and CAPS. - The knowledge and expertise from CAPS and CAPS PIs in CHART have been invaluable to the work to harmonise the 4 studies in CHART and to create data dictionary/CAPTURE JIA projects . The strong partnership between CAPS and CHARMS is greatly enhanced by the regular CHART meetings and research activity. |
| Start Year | 2014 |
| Description | CAPTURE JIA (Updated for 2016 - 7) |
| Organisation | Alder Hey Children's NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | CHART and CAPTURE JIA teams work closely together, CAPTURE JIA as a wider service dataset for JIA includes data collection for research. It is in this overlap that the two have pulled resources. CHART staff have made recommendations to CAPTURE JIA for data item inclusions and data field formats for inclusion in the CAPTURE JIA data dictionary and vice versa for the CHART data dictionary. All CHART co-PIs are involved in the CAPTURE JIA steering committee. Also involved in CAPTURE JIA are the BSPAR HQIP group. In 2017 GOSH to open as a recruiting centre for CAPTURE JIA pilot. In discussions with local GOSH Electronic Patient Management team (to which GOSH is in transition) to adopt and incorporate the CAPTURE JIA forms trust wide as a disease specific electronic patient record. |
| Collaborator Contribution | CAPTURE JIA project has been led by the University of Manchester, acquiring funding and running meetings with stakeholder's from across the UK to finalize a proposed dataset that was developed from UoM analysis of all parties recommendations. In 2016 CAPTURE JIA approved for pilot UK study. |
| Impact | 2015/6 Submission: - CAPTURE JIA data dictionary to work towards a core common data set for use in EPR in every day care across the UK . - CHART harmonised data dictionary and clinical data set - CAPTURE JIA is now applying for further funding to pilot the dataset for implementation in hospitals across the UK Update for 2016/7 submission: CAPTURE JIA received ethics and HRA approval for a pilot study in UK hospitals (Nov 2016.)The CAPTURE-JIA forms have been designed to follow the flow of the clinical consultation.The data dictionary defines each data item. These forms provide a standardized clinical and research data collection across the UK. The aims of the pilot study are to develop, pilot and test a Microsoft Word proforma to collect CAPTURE-JIA data items in 'real world' clinical practice, ensuring that CAPTURE-JIA is ready for adoption nationwide. We envisage that our proposed qualitative approach, including stakeholder-led proforma modification, will enable stakeholder engagement ('buy in'), and will inform guidance on use of CAPTURE-JIA in the clinical setting.The CAPTURE-JIA dataset will foster collaborative and effective working, benchmarking of clinical services against quality indicators, and aligning treatment strategies and clinical research opportunities, with the aim of improving clinical care for CYP with JIA in the UK. The CAPTURE JIA dataset thereby has worked closely with the CHART project due to overarching aims of standardisation across UK JIA research, collecting the right data at the right time and in the right way to maximise clinical benefit, but also enrich JIA research studies by improving data collection nationally and to enable more effective cross-cohort sharing in the future, beyond the four key CHART partner studies. |
| Start Year | 2015 |
| Description | CAPTURE JIA (Updated for 2016 - 7) |
| Organisation | British Society for Paediatric and Adolescent Rheumatology (BSPAR) |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | CHART and CAPTURE JIA teams work closely together, CAPTURE JIA as a wider service dataset for JIA includes data collection for research. It is in this overlap that the two have pulled resources. CHART staff have made recommendations to CAPTURE JIA for data item inclusions and data field formats for inclusion in the CAPTURE JIA data dictionary and vice versa for the CHART data dictionary. All CHART co-PIs are involved in the CAPTURE JIA steering committee. Also involved in CAPTURE JIA are the BSPAR HQIP group. In 2017 GOSH to open as a recruiting centre for CAPTURE JIA pilot. In discussions with local GOSH Electronic Patient Management team (to which GOSH is in transition) to adopt and incorporate the CAPTURE JIA forms trust wide as a disease specific electronic patient record. |
| Collaborator Contribution | CAPTURE JIA project has been led by the University of Manchester, acquiring funding and running meetings with stakeholder's from across the UK to finalize a proposed dataset that was developed from UoM analysis of all parties recommendations. In 2016 CAPTURE JIA approved for pilot UK study. |
| Impact | 2015/6 Submission: - CAPTURE JIA data dictionary to work towards a core common data set for use in EPR in every day care across the UK . - CHART harmonised data dictionary and clinical data set - CAPTURE JIA is now applying for further funding to pilot the dataset for implementation in hospitals across the UK Update for 2016/7 submission: CAPTURE JIA received ethics and HRA approval for a pilot study in UK hospitals (Nov 2016.)The CAPTURE-JIA forms have been designed to follow the flow of the clinical consultation.The data dictionary defines each data item. These forms provide a standardized clinical and research data collection across the UK. The aims of the pilot study are to develop, pilot and test a Microsoft Word proforma to collect CAPTURE-JIA data items in 'real world' clinical practice, ensuring that CAPTURE-JIA is ready for adoption nationwide. We envisage that our proposed qualitative approach, including stakeholder-led proforma modification, will enable stakeholder engagement ('buy in'), and will inform guidance on use of CAPTURE-JIA in the clinical setting.The CAPTURE-JIA dataset will foster collaborative and effective working, benchmarking of clinical services against quality indicators, and aligning treatment strategies and clinical research opportunities, with the aim of improving clinical care for CYP with JIA in the UK. The CAPTURE JIA dataset thereby has worked closely with the CHART project due to overarching aims of standardisation across UK JIA research, collecting the right data at the right time and in the right way to maximise clinical benefit, but also enrich JIA research studies by improving data collection nationally and to enable more effective cross-cohort sharing in the future, beyond the four key CHART partner studies. |
| Start Year | 2015 |
| Description | CAPTURE JIA (Updated for 2016 - 7) |
| Organisation | Great Ormond Street Hospital (GOSH) |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | CHART and CAPTURE JIA teams work closely together, CAPTURE JIA as a wider service dataset for JIA includes data collection for research. It is in this overlap that the two have pulled resources. CHART staff have made recommendations to CAPTURE JIA for data item inclusions and data field formats for inclusion in the CAPTURE JIA data dictionary and vice versa for the CHART data dictionary. All CHART co-PIs are involved in the CAPTURE JIA steering committee. Also involved in CAPTURE JIA are the BSPAR HQIP group. In 2017 GOSH to open as a recruiting centre for CAPTURE JIA pilot. In discussions with local GOSH Electronic Patient Management team (to which GOSH is in transition) to adopt and incorporate the CAPTURE JIA forms trust wide as a disease specific electronic patient record. |
| Collaborator Contribution | CAPTURE JIA project has been led by the University of Manchester, acquiring funding and running meetings with stakeholder's from across the UK to finalize a proposed dataset that was developed from UoM analysis of all parties recommendations. In 2016 CAPTURE JIA approved for pilot UK study. |
| Impact | 2015/6 Submission: - CAPTURE JIA data dictionary to work towards a core common data set for use in EPR in every day care across the UK . - CHART harmonised data dictionary and clinical data set - CAPTURE JIA is now applying for further funding to pilot the dataset for implementation in hospitals across the UK Update for 2016/7 submission: CAPTURE JIA received ethics and HRA approval for a pilot study in UK hospitals (Nov 2016.)The CAPTURE-JIA forms have been designed to follow the flow of the clinical consultation.The data dictionary defines each data item. These forms provide a standardized clinical and research data collection across the UK. The aims of the pilot study are to develop, pilot and test a Microsoft Word proforma to collect CAPTURE-JIA data items in 'real world' clinical practice, ensuring that CAPTURE-JIA is ready for adoption nationwide. We envisage that our proposed qualitative approach, including stakeholder-led proforma modification, will enable stakeholder engagement ('buy in'), and will inform guidance on use of CAPTURE-JIA in the clinical setting.The CAPTURE-JIA dataset will foster collaborative and effective working, benchmarking of clinical services against quality indicators, and aligning treatment strategies and clinical research opportunities, with the aim of improving clinical care for CYP with JIA in the UK. The CAPTURE JIA dataset thereby has worked closely with the CHART project due to overarching aims of standardisation across UK JIA research, collecting the right data at the right time and in the right way to maximise clinical benefit, but also enrich JIA research studies by improving data collection nationally and to enable more effective cross-cohort sharing in the future, beyond the four key CHART partner studies. |
| Start Year | 2015 |
| Description | CAPTURE JIA (Updated for 2016 - 7) |
| Organisation | University of Liverpool |
| Department | Institute of Translational Medicine |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | CHART and CAPTURE JIA teams work closely together, CAPTURE JIA as a wider service dataset for JIA includes data collection for research. It is in this overlap that the two have pulled resources. CHART staff have made recommendations to CAPTURE JIA for data item inclusions and data field formats for inclusion in the CAPTURE JIA data dictionary and vice versa for the CHART data dictionary. All CHART co-PIs are involved in the CAPTURE JIA steering committee. Also involved in CAPTURE JIA are the BSPAR HQIP group. In 2017 GOSH to open as a recruiting centre for CAPTURE JIA pilot. In discussions with local GOSH Electronic Patient Management team (to which GOSH is in transition) to adopt and incorporate the CAPTURE JIA forms trust wide as a disease specific electronic patient record. |
| Collaborator Contribution | CAPTURE JIA project has been led by the University of Manchester, acquiring funding and running meetings with stakeholder's from across the UK to finalize a proposed dataset that was developed from UoM analysis of all parties recommendations. In 2016 CAPTURE JIA approved for pilot UK study. |
| Impact | 2015/6 Submission: - CAPTURE JIA data dictionary to work towards a core common data set for use in EPR in every day care across the UK . - CHART harmonised data dictionary and clinical data set - CAPTURE JIA is now applying for further funding to pilot the dataset for implementation in hospitals across the UK Update for 2016/7 submission: CAPTURE JIA received ethics and HRA approval for a pilot study in UK hospitals (Nov 2016.)The CAPTURE-JIA forms have been designed to follow the flow of the clinical consultation.The data dictionary defines each data item. These forms provide a standardized clinical and research data collection across the UK. The aims of the pilot study are to develop, pilot and test a Microsoft Word proforma to collect CAPTURE-JIA data items in 'real world' clinical practice, ensuring that CAPTURE-JIA is ready for adoption nationwide. We envisage that our proposed qualitative approach, including stakeholder-led proforma modification, will enable stakeholder engagement ('buy in'), and will inform guidance on use of CAPTURE-JIA in the clinical setting.The CAPTURE-JIA dataset will foster collaborative and effective working, benchmarking of clinical services against quality indicators, and aligning treatment strategies and clinical research opportunities, with the aim of improving clinical care for CYP with JIA in the UK. The CAPTURE JIA dataset thereby has worked closely with the CHART project due to overarching aims of standardisation across UK JIA research, collecting the right data at the right time and in the right way to maximise clinical benefit, but also enrich JIA research studies by improving data collection nationally and to enable more effective cross-cohort sharing in the future, beyond the four key CHART partner studies. |
| Start Year | 2015 |
| Description | CAPTURE JIA (Updated for 2016 - 7) |
| Organisation | University of Manchester |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | CHART and CAPTURE JIA teams work closely together, CAPTURE JIA as a wider service dataset for JIA includes data collection for research. It is in this overlap that the two have pulled resources. CHART staff have made recommendations to CAPTURE JIA for data item inclusions and data field formats for inclusion in the CAPTURE JIA data dictionary and vice versa for the CHART data dictionary. All CHART co-PIs are involved in the CAPTURE JIA steering committee. Also involved in CAPTURE JIA are the BSPAR HQIP group. In 2017 GOSH to open as a recruiting centre for CAPTURE JIA pilot. In discussions with local GOSH Electronic Patient Management team (to which GOSH is in transition) to adopt and incorporate the CAPTURE JIA forms trust wide as a disease specific electronic patient record. |
| Collaborator Contribution | CAPTURE JIA project has been led by the University of Manchester, acquiring funding and running meetings with stakeholder's from across the UK to finalize a proposed dataset that was developed from UoM analysis of all parties recommendations. In 2016 CAPTURE JIA approved for pilot UK study. |
| Impact | 2015/6 Submission: - CAPTURE JIA data dictionary to work towards a core common data set for use in EPR in every day care across the UK . - CHART harmonised data dictionary and clinical data set - CAPTURE JIA is now applying for further funding to pilot the dataset for implementation in hospitals across the UK Update for 2016/7 submission: CAPTURE JIA received ethics and HRA approval for a pilot study in UK hospitals (Nov 2016.)The CAPTURE-JIA forms have been designed to follow the flow of the clinical consultation.The data dictionary defines each data item. These forms provide a standardized clinical and research data collection across the UK. The aims of the pilot study are to develop, pilot and test a Microsoft Word proforma to collect CAPTURE-JIA data items in 'real world' clinical practice, ensuring that CAPTURE-JIA is ready for adoption nationwide. We envisage that our proposed qualitative approach, including stakeholder-led proforma modification, will enable stakeholder engagement ('buy in'), and will inform guidance on use of CAPTURE-JIA in the clinical setting.The CAPTURE-JIA dataset will foster collaborative and effective working, benchmarking of clinical services against quality indicators, and aligning treatment strategies and clinical research opportunities, with the aim of improving clinical care for CYP with JIA in the UK. The CAPTURE JIA dataset thereby has worked closely with the CHART project due to overarching aims of standardisation across UK JIA research, collecting the right data at the right time and in the right way to maximise clinical benefit, but also enrich JIA research studies by improving data collection nationally and to enable more effective cross-cohort sharing in the future, beyond the four key CHART partner studies. |
| Start Year | 2015 |
| Description | CHARMS NON-UK Centres (updated for 2016-7) |
| Organisation | General University Hospital in Prague |
| Country | Czech Republic |
| Sector | Hospitals |
| PI Contribution | UCL leads this partnership receiving data and samples from Utrecht/Prague for inclusion in CHARMS. In 2016/7 we have extended this partnership to Poland. |
| Collaborator Contribution | Utrecht and Prague have contributed retrospective MTX cases to CHARMS, 195 and 45 respectively. These contributions were directly related to a CHARMS MTX GWAS study. Poland are to begin sending DNA samples and clinical data in Spring 2017. |
| Impact | The prague/Utrecht cases were a direct inclusion in the paper below which in turn entailed the awarded MRC partnership grant (Aug 14). Cobb, J.,* Cule, E.,* Moncrieffe, H.,* Hinks, A., Ursu, S., Patrick, F., Kassoumeri, L., Flynn, E., Bulatovic, M., Wulffraat, N., van Zelst, B., de Jonge, R., Bohm, M., Dolezalova, P., Hirani, S., Newman, S., Whitworth, P., Southwood, T., Childhood Arthritis Response to Medication Study (CHARMS), Childhood Arthritis Prospective Study (CAPS), BSPAR study group, De Iorio, M., Wedderburn L.R.,* Thomson W.,* (2014). Genome-wide association of methotrexate response identifies novel genes in a large cohort of Juvenile Idiopathic Arthritis cases, Pharmacogenomics J., 14(4):356-64, doi: 10.1038/tpj.2014.3. |
| Start Year | 2010 |
| Description | CHARMS NON-UK Centres (updated for 2016-7) |
| Organisation | Medical University of Lodz |
| Country | Poland |
| Sector | Academic/University |
| PI Contribution | UCL leads this partnership receiving data and samples from Utrecht/Prague for inclusion in CHARMS. In 2016/7 we have extended this partnership to Poland. |
| Collaborator Contribution | Utrecht and Prague have contributed retrospective MTX cases to CHARMS, 195 and 45 respectively. These contributions were directly related to a CHARMS MTX GWAS study. Poland are to begin sending DNA samples and clinical data in Spring 2017. |
| Impact | The prague/Utrecht cases were a direct inclusion in the paper below which in turn entailed the awarded MRC partnership grant (Aug 14). Cobb, J.,* Cule, E.,* Moncrieffe, H.,* Hinks, A., Ursu, S., Patrick, F., Kassoumeri, L., Flynn, E., Bulatovic, M., Wulffraat, N., van Zelst, B., de Jonge, R., Bohm, M., Dolezalova, P., Hirani, S., Newman, S., Whitworth, P., Southwood, T., Childhood Arthritis Response to Medication Study (CHARMS), Childhood Arthritis Prospective Study (CAPS), BSPAR study group, De Iorio, M., Wedderburn L.R.,* Thomson W.,* (2014). Genome-wide association of methotrexate response identifies novel genes in a large cohort of Juvenile Idiopathic Arthritis cases, Pharmacogenomics J., 14(4):356-64, doi: 10.1038/tpj.2014.3. |
| Start Year | 2010 |
| Description | CHARMS NON-UK Centres (updated for 2016-7) |
| Organisation | Utrecht University |
| Country | Netherlands |
| Sector | Academic/University |
| PI Contribution | UCL leads this partnership receiving data and samples from Utrecht/Prague for inclusion in CHARMS. In 2016/7 we have extended this partnership to Poland. |
| Collaborator Contribution | Utrecht and Prague have contributed retrospective MTX cases to CHARMS, 195 and 45 respectively. These contributions were directly related to a CHARMS MTX GWAS study. Poland are to begin sending DNA samples and clinical data in Spring 2017. |
| Impact | The prague/Utrecht cases were a direct inclusion in the paper below which in turn entailed the awarded MRC partnership grant (Aug 14). Cobb, J.,* Cule, E.,* Moncrieffe, H.,* Hinks, A., Ursu, S., Patrick, F., Kassoumeri, L., Flynn, E., Bulatovic, M., Wulffraat, N., van Zelst, B., de Jonge, R., Bohm, M., Dolezalova, P., Hirani, S., Newman, S., Whitworth, P., Southwood, T., Childhood Arthritis Response to Medication Study (CHARMS), Childhood Arthritis Prospective Study (CAPS), BSPAR study group, De Iorio, M., Wedderburn L.R.,* Thomson W.,* (2014). Genome-wide association of methotrexate response identifies novel genes in a large cohort of Juvenile Idiopathic Arthritis cases, Pharmacogenomics J., 14(4):356-64, doi: 10.1038/tpj.2014.3. |
| Start Year | 2010 |
| Description | CHARMS Steering Committee (updated 2016/7) |
| Organisation | City, University of London |
| Department | Department of Psychology |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Leading the committee, chairing and organizing bi annual meetings, reporting progress to stakeholders. CHARMS one of the for key partner CHART studies. |
| Collaborator Contribution | Comment and input into the direction and methods of the research as external expertise, parents, patients and funders. As well as assessing applications for data sharing. |
| Impact | - Managed CHARMS study from 2006 - present - Collaborations listed under MTX pharmacogenomics (S.Thomson), Clinical Fellowship (S Sampath), Clinical Fellowship (J Palman) proteomics work, all assessed and reviewed CHARMS SC for input. |
| Start Year | 2006 |
| Description | CHARMS Steering Committee (updated 2016/7) |
| Organisation | Great Ormond Street Hospital (GOSH) |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | Leading the committee, chairing and organizing bi annual meetings, reporting progress to stakeholders. CHARMS one of the for key partner CHART studies. |
| Collaborator Contribution | Comment and input into the direction and methods of the research as external expertise, parents, patients and funders. As well as assessing applications for data sharing. |
| Impact | - Managed CHARMS study from 2006 - present - Collaborations listed under MTX pharmacogenomics (S.Thomson), Clinical Fellowship (S Sampath), Clinical Fellowship (J Palman) proteomics work, all assessed and reviewed CHARMS SC for input. |
| Start Year | 2006 |
| Description | CHARMS Steering Committee (updated 2016/7) |
| Organisation | Great Ormond Street Hospital Children's Charity (GOSHCC) |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Leading the committee, chairing and organizing bi annual meetings, reporting progress to stakeholders. CHARMS one of the for key partner CHART studies. |
| Collaborator Contribution | Comment and input into the direction and methods of the research as external expertise, parents, patients and funders. As well as assessing applications for data sharing. |
| Impact | - Managed CHARMS study from 2006 - present - Collaborations listed under MTX pharmacogenomics (S.Thomson), Clinical Fellowship (S Sampath), Clinical Fellowship (J Palman) proteomics work, all assessed and reviewed CHARMS SC for input. |
| Start Year | 2006 |
| Description | CHARMS Steering Committee (updated 2016/7) |
| Organisation | Sparks Charity |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Leading the committee, chairing and organizing bi annual meetings, reporting progress to stakeholders. CHARMS one of the for key partner CHART studies. |
| Collaborator Contribution | Comment and input into the direction and methods of the research as external expertise, parents, patients and funders. As well as assessing applications for data sharing. |
| Impact | - Managed CHARMS study from 2006 - present - Collaborations listed under MTX pharmacogenomics (S.Thomson), Clinical Fellowship (S Sampath), Clinical Fellowship (J Palman) proteomics work, all assessed and reviewed CHARMS SC for input. |
| Start Year | 2006 |
| Description | CHARMS Steering Committee (updated 2016/7) |
| Organisation | University College London |
| Department | Institute of Child Health |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Leading the committee, chairing and organizing bi annual meetings, reporting progress to stakeholders. CHARMS one of the for key partner CHART studies. |
| Collaborator Contribution | Comment and input into the direction and methods of the research as external expertise, parents, patients and funders. As well as assessing applications for data sharing. |
| Impact | - Managed CHARMS study from 2006 - present - Collaborations listed under MTX pharmacogenomics (S.Thomson), Clinical Fellowship (S Sampath), Clinical Fellowship (J Palman) proteomics work, all assessed and reviewed CHARMS SC for input. |
| Start Year | 2006 |
| Description | CHARMS Steering Committee (updated 2016/7) |
| Organisation | University of Manchester |
| Department | Centre for Genomic Medicine |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Leading the committee, chairing and organizing bi annual meetings, reporting progress to stakeholders. CHARMS one of the for key partner CHART studies. |
| Collaborator Contribution | Comment and input into the direction and methods of the research as external expertise, parents, patients and funders. As well as assessing applications for data sharing. |
| Impact | - Managed CHARMS study from 2006 - present - Collaborations listed under MTX pharmacogenomics (S.Thomson), Clinical Fellowship (S Sampath), Clinical Fellowship (J Palman) proteomics work, all assessed and reviewed CHARMS SC for input. |
| Start Year | 2006 |
| Description | CHARMS UK Centres updated for 2017/18 |
| Organisation | Addenbrooke's Hospital |
| Department | Department of Paediatrics |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | We have opened the UK sites above to CHARMS, and have built strong working relationships with the local PI's and research teams through face to face meetings at Rheumatology Conferences and through training/induction calls. We provide on going support to all sites , as well as supply sites with all relevant materials required to recruit. |
| Collaborator Contribution | The CHARMS UK centres recruit to the retrospective methotrexate cohort of CHARMS, providing data and samples as required for each patient. The contribution of the external centres to our recruitment is substantial and enable us to recruit JIA patients from across the UK, increasing our power in research analysis. |
| Impact | Recruits from the external centres are included in amongst our own samples for analysis and inclusion in the CHARMS cohort in all publications. |
| Start Year | 2010 |
| Description | CHARMS UK Centres updated for 2017/18 |
| Organisation | Birmingham Children's Hospital |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | We have opened the UK sites above to CHARMS, and have built strong working relationships with the local PI's and research teams through face to face meetings at Rheumatology Conferences and through training/induction calls. We provide on going support to all sites , as well as supply sites with all relevant materials required to recruit. |
| Collaborator Contribution | The CHARMS UK centres recruit to the retrospective methotrexate cohort of CHARMS, providing data and samples as required for each patient. The contribution of the external centres to our recruitment is substantial and enable us to recruit JIA patients from across the UK, increasing our power in research analysis. |
| Impact | Recruits from the external centres are included in amongst our own samples for analysis and inclusion in the CHARMS cohort in all publications. |
| Start Year | 2010 |
| Description | CHARMS UK Centres updated for 2017/18 |
| Organisation | Norfolk and Norwich University Hospital |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | We have opened the UK sites above to CHARMS, and have built strong working relationships with the local PI's and research teams through face to face meetings at Rheumatology Conferences and through training/induction calls. We provide on going support to all sites , as well as supply sites with all relevant materials required to recruit. |
| Collaborator Contribution | The CHARMS UK centres recruit to the retrospective methotrexate cohort of CHARMS, providing data and samples as required for each patient. The contribution of the external centres to our recruitment is substantial and enable us to recruit JIA patients from across the UK, increasing our power in research analysis. |
| Impact | Recruits from the external centres are included in amongst our own samples for analysis and inclusion in the CHARMS cohort in all publications. |
| Start Year | 2010 |
| Description | CHARMS UK Centres updated for 2017/18 |
| Organisation | Nottingham University Hospitals NHS Trust |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We have opened the UK sites above to CHARMS, and have built strong working relationships with the local PI's and research teams through face to face meetings at Rheumatology Conferences and through training/induction calls. We provide on going support to all sites , as well as supply sites with all relevant materials required to recruit. |
| Collaborator Contribution | The CHARMS UK centres recruit to the retrospective methotrexate cohort of CHARMS, providing data and samples as required for each patient. The contribution of the external centres to our recruitment is substantial and enable us to recruit JIA patients from across the UK, increasing our power in research analysis. |
| Impact | Recruits from the external centres are included in amongst our own samples for analysis and inclusion in the CHARMS cohort in all publications. |
| Start Year | 2010 |
| Description | CHARMS UK Centres updated for 2017/18 |
| Organisation | Royal Wolverhampton Hospitals NHS Trust |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | We have opened the UK sites above to CHARMS, and have built strong working relationships with the local PI's and research teams through face to face meetings at Rheumatology Conferences and through training/induction calls. We provide on going support to all sites , as well as supply sites with all relevant materials required to recruit. |
| Collaborator Contribution | The CHARMS UK centres recruit to the retrospective methotrexate cohort of CHARMS, providing data and samples as required for each patient. The contribution of the external centres to our recruitment is substantial and enable us to recruit JIA patients from across the UK, increasing our power in research analysis. |
| Impact | Recruits from the external centres are included in amongst our own samples for analysis and inclusion in the CHARMS cohort in all publications. |
| Start Year | 2010 |
| Description | CHARMS UK Centres updated for 2017/18 |
| Organisation | Sheffield Children's NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | We have opened the UK sites above to CHARMS, and have built strong working relationships with the local PI's and research teams through face to face meetings at Rheumatology Conferences and through training/induction calls. We provide on going support to all sites , as well as supply sites with all relevant materials required to recruit. |
| Collaborator Contribution | The CHARMS UK centres recruit to the retrospective methotrexate cohort of CHARMS, providing data and samples as required for each patient. The contribution of the external centres to our recruitment is substantial and enable us to recruit JIA patients from across the UK, increasing our power in research analysis. |
| Impact | Recruits from the external centres are included in amongst our own samples for analysis and inclusion in the CHARMS cohort in all publications. |
| Start Year | 2010 |
| Description | CHARMS UK Centres updated for 2017/18 |
| Organisation | University College London Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We have opened the UK sites above to CHARMS, and have built strong working relationships with the local PI's and research teams through face to face meetings at Rheumatology Conferences and through training/induction calls. We provide on going support to all sites , as well as supply sites with all relevant materials required to recruit. |
| Collaborator Contribution | The CHARMS UK centres recruit to the retrospective methotrexate cohort of CHARMS, providing data and samples as required for each patient. The contribution of the external centres to our recruitment is substantial and enable us to recruit JIA patients from across the UK, increasing our power in research analysis. |
| Impact | Recruits from the external centres are included in amongst our own samples for analysis and inclusion in the CHARMS cohort in all publications. |
| Start Year | 2010 |
| Description | CHARMS UK Centres updated for 2017/18 |
| Organisation | University Hospital Southampton NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | We have opened the UK sites above to CHARMS, and have built strong working relationships with the local PI's and research teams through face to face meetings at Rheumatology Conferences and through training/induction calls. We provide on going support to all sites , as well as supply sites with all relevant materials required to recruit. |
| Collaborator Contribution | The CHARMS UK centres recruit to the retrospective methotrexate cohort of CHARMS, providing data and samples as required for each patient. The contribution of the external centres to our recruitment is substantial and enable us to recruit JIA patients from across the UK, increasing our power in research analysis. |
| Impact | Recruits from the external centres are included in amongst our own samples for analysis and inclusion in the CHARMS cohort in all publications. |
| Start Year | 2010 |
| Description | CHART Management Group (updated for 2017/2018 submission) |
| Organisation | University of Liverpool |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | UCL is the lead partner in this collaboration - directing and managing the CHART project and staff. UCL organises and chairs quarterly face to face Consortium Management Group (CMG) meetings with the other 3 CHART Co-PIs, and stakeholders where appropriate. The Management group oversees sample and data use in CHART, as well as liaison with other partners and stakeholders ( eg Pharma). UCL, as executive of the CHART management group also manages funding, grant reports and recruitment of staff to CHART. |
| Collaborator Contribution | The 3 CHART Co-PIs and their respective HEIs (UoM and UoL) assist and review all consortium contracts and grant applications, and provide support to the goals and targets of the project at quarterly face to face meetings. The CHART Co-PIs manage linked projects and staff, and draw work together to meet grant deadlines and targets. Al co-Is assist with seeking funding opportunities, several of which are now listed under the further funding section of this report. All CHART CO-Is are CO-Is on CLUSTER consortium now going forward. |
| Impact | 2015/6 submission CMG is organizing and hosting an International JIA Stratified Medicine Conference in March 16 bringing together key researchers and partners worldwide CMG has met all year 1 GANTT grant milestones for the CHART consortium, and is responsible for being ahead of deadlines in the deliverance of several key milestone tasks 2016/7 submission CMG has partnered with new collaborators to develop the CLUSTER consortium bid to which the CHART sample and data alignment and partnership forms a solid foundation. After completion of the data dictionary, CMG has secured some staff time of Janssen, QMUL, bioinformatists and datascientists based at the University of Manchester data dictionary to agree setting up CHART TRANSMART at Manchester with a pilot data set now uploaded. CMG has also overseen the development of the CHART biospecimen catalogue and CHART Lab SOPs comparison. CMG has ensured all year 2 milestone tasks (as per GANTT chart) have been achieved. We have already achieved some of the year 3 milestones, with the next key ones for completion being the final TRANSMART set up process to incorporate the CHARMS data with the other 3 study datasets and beginning the ethical amendment process on the four key partner studies to enable to the collection of new samples and data, and more systematic data-sharing.. Analyses and clinical predicting modelling on this data has already been undertaken at Manchester through the clinical fellowship with Dr. Sunil Sampath (also listed under collaborations.) CMH have continued to publicize and spread awareness of CHART through various engagement activities and talks as listed in the relevant sections. 2017/8 submission CMG has successfully developed the CLUSTER consortium bid to which the CHART sample and data alignment and partnership forms a solid foundation. CMG has developed the CHART TRANSMART database in the emedlab, see section under Research Databases and Models. CMG has ensured all year 3 milestone tasks (as per GANTT chart) have been achieved. We have already achieved some of the year 4 milestones. Analyses and clinical predicting modelling on this data continues. CMG have continued to publicize and spread awareness of CHART through various engagement activities and talks as listed in the relevant sections. |
| Start Year | 2014 |
| Description | CHART Management Group (updated for 2017/2018 submission) |
| Organisation | University of Manchester |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | UCL is the lead partner in this collaboration - directing and managing the CHART project and staff. UCL organises and chairs quarterly face to face Consortium Management Group (CMG) meetings with the other 3 CHART Co-PIs, and stakeholders where appropriate. The Management group oversees sample and data use in CHART, as well as liaison with other partners and stakeholders ( eg Pharma). UCL, as executive of the CHART management group also manages funding, grant reports and recruitment of staff to CHART. |
| Collaborator Contribution | The 3 CHART Co-PIs and their respective HEIs (UoM and UoL) assist and review all consortium contracts and grant applications, and provide support to the goals and targets of the project at quarterly face to face meetings. The CHART Co-PIs manage linked projects and staff, and draw work together to meet grant deadlines and targets. Al co-Is assist with seeking funding opportunities, several of which are now listed under the further funding section of this report. All CHART CO-Is are CO-Is on CLUSTER consortium now going forward. |
| Impact | 2015/6 submission CMG is organizing and hosting an International JIA Stratified Medicine Conference in March 16 bringing together key researchers and partners worldwide CMG has met all year 1 GANTT grant milestones for the CHART consortium, and is responsible for being ahead of deadlines in the deliverance of several key milestone tasks 2016/7 submission CMG has partnered with new collaborators to develop the CLUSTER consortium bid to which the CHART sample and data alignment and partnership forms a solid foundation. After completion of the data dictionary, CMG has secured some staff time of Janssen, QMUL, bioinformatists and datascientists based at the University of Manchester data dictionary to agree setting up CHART TRANSMART at Manchester with a pilot data set now uploaded. CMG has also overseen the development of the CHART biospecimen catalogue and CHART Lab SOPs comparison. CMG has ensured all year 2 milestone tasks (as per GANTT chart) have been achieved. We have already achieved some of the year 3 milestones, with the next key ones for completion being the final TRANSMART set up process to incorporate the CHARMS data with the other 3 study datasets and beginning the ethical amendment process on the four key partner studies to enable to the collection of new samples and data, and more systematic data-sharing.. Analyses and clinical predicting modelling on this data has already been undertaken at Manchester through the clinical fellowship with Dr. Sunil Sampath (also listed under collaborations.) CMH have continued to publicize and spread awareness of CHART through various engagement activities and talks as listed in the relevant sections. 2017/8 submission CMG has successfully developed the CLUSTER consortium bid to which the CHART sample and data alignment and partnership forms a solid foundation. CMG has developed the CHART TRANSMART database in the emedlab, see section under Research Databases and Models. CMG has ensured all year 3 milestone tasks (as per GANTT chart) have been achieved. We have already achieved some of the year 4 milestones. Analyses and clinical predicting modelling on this data continues. CMG have continued to publicize and spread awareness of CHART through various engagement activities and talks as listed in the relevant sections. |
| Start Year | 2014 |
| Description | CHART Management Group (updated for 2017/2018 submission) |
| Organisation | University of Manchester |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | UCL is the lead partner in this collaboration - directing and managing the CHART project and staff. UCL organises and chairs quarterly face to face Consortium Management Group (CMG) meetings with the other 3 CHART Co-PIs, and stakeholders where appropriate. The Management group oversees sample and data use in CHART, as well as liaison with other partners and stakeholders ( eg Pharma). UCL, as executive of the CHART management group also manages funding, grant reports and recruitment of staff to CHART. |
| Collaborator Contribution | The 3 CHART Co-PIs and their respective HEIs (UoM and UoL) assist and review all consortium contracts and grant applications, and provide support to the goals and targets of the project at quarterly face to face meetings. The CHART Co-PIs manage linked projects and staff, and draw work together to meet grant deadlines and targets. Al co-Is assist with seeking funding opportunities, several of which are now listed under the further funding section of this report. All CHART CO-Is are CO-Is on CLUSTER consortium now going forward. |
| Impact | 2015/6 submission CMG is organizing and hosting an International JIA Stratified Medicine Conference in March 16 bringing together key researchers and partners worldwide CMG has met all year 1 GANTT grant milestones for the CHART consortium, and is responsible for being ahead of deadlines in the deliverance of several key milestone tasks 2016/7 submission CMG has partnered with new collaborators to develop the CLUSTER consortium bid to which the CHART sample and data alignment and partnership forms a solid foundation. After completion of the data dictionary, CMG has secured some staff time of Janssen, QMUL, bioinformatists and datascientists based at the University of Manchester data dictionary to agree setting up CHART TRANSMART at Manchester with a pilot data set now uploaded. CMG has also overseen the development of the CHART biospecimen catalogue and CHART Lab SOPs comparison. CMG has ensured all year 2 milestone tasks (as per GANTT chart) have been achieved. We have already achieved some of the year 3 milestones, with the next key ones for completion being the final TRANSMART set up process to incorporate the CHARMS data with the other 3 study datasets and beginning the ethical amendment process on the four key partner studies to enable to the collection of new samples and data, and more systematic data-sharing.. Analyses and clinical predicting modelling on this data has already been undertaken at Manchester through the clinical fellowship with Dr. Sunil Sampath (also listed under collaborations.) CMH have continued to publicize and spread awareness of CHART through various engagement activities and talks as listed in the relevant sections. 2017/8 submission CMG has successfully developed the CLUSTER consortium bid to which the CHART sample and data alignment and partnership forms a solid foundation. CMG has developed the CHART TRANSMART database in the emedlab, see section under Research Databases and Models. CMG has ensured all year 3 milestone tasks (as per GANTT chart) have been achieved. We have already achieved some of the year 4 milestones. Analyses and clinical predicting modelling on this data continues. CMG have continued to publicize and spread awareness of CHART through various engagement activities and talks as listed in the relevant sections. |
| Start Year | 2014 |
| Description | CHART Quick Win Working Group (updated for 2016 - 17 submission) |
| Organisation | University of Manchester |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The CHART QW Working group comprised: Project Manager: Gillian Armitt (Manchester) /Clare Heard (UCL), + the study coordinators from each of the 4 partner studies (BCRD - Katy Mowbray/ BSPAR-Et - Emily Sutton/ CAPS - Andrew Smith/ CHARMS - Clare Heard) + clinical representatives (Dr Sunil Sampath - Manchester) and Manchester Unit Data dictionary team representatives (Kamilla Kopec Harding, Mauro Tutini.) The CHART QW Group reports directly to the CHART Management Group (headed by CHART PI Lucy Wedderburn) via Clare Heard. The purpose of the overarching CHART project, of which this project forms part, is to increase the statistical power for analysis of data from studies in JIA, by being able to combine data across studies. The purpose of the QW project is to contribute to the above by: 1. identifying data items in the BCRD, BSPAR-Etanercept, CAPS and CHARMS studies that are effectively the same ('quick wins'). 'Effectively the same' means that: their intended meaning is the same; although the data format may differ, formats are sufficiently similar to allow the data to be readily combined. 2. to capture a list of data items requiring more work to understand their relationship, i.e. whether they are effectively the same or are different. . |
| Collaborator Contribution | Gillian Armitt created a mind map to show all the data items collected in the five large cohort studies in JIA (BCRD, BSPAR-Etanercept, CAPS and CHARMS; also JIA-GCUK though this will not be considered further). The mind map includes domains such as: Timepoints/Demographics (gender, ethnicity, age of onset, ILAR sub-type)/Outcomes (Core Outcome Variables; other outcomes). Gillian Armitt has been in control of the documentation for the group, and has recorded minutes etc. Clare Heard (UCL) and Gillian Armitt have presented executive summaries of the QW progress at CMG meetings, and together formed a 'Gold Standard' for all data items to be presented as part of the CAPTURE JIA Meeting in May 2015. The other study coordinators have contributed to the work by summarising and completing tables reflecting data collection/recording for each of the data items in their corresponding studies, to form large comparison tables which the group worked then together to produce executive summaries. |
| Impact | The benefits of the project: 1. It will be possible to combine historic data from BCRD, BSPAR-Etanercept, CAPS and CHARMS studies, to answer CHART's research questions/ 2. Information gained will inform development of the CHART data dictionary for prospective data collection. 3. Information gained will inform common methodologies for future data collection Update for 2016 - 2017 submission: the QW Group completed its data mapping to produce a final CHART data dictionary which lists the items identified as part of an agreed core stratified medicine dataset for CHART. The data dictionary lists the proposed "gold standard" coding for each item in the CHART TRANSMART hub. This 'gold standard' set fed into the CAPTURE JIA standardized set (see entry in collaborations) and vice versa. In 2016 - 2017 data scientists in Manchester have been working to create scripts for each data item for 3 of the 4 CHART studies to translate each item from their current formats in the respective study databases into the format specified for the CHART TRANSMART system. |
| Start Year | 2014 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | AbbVie Inc |
| Country | United States |
| Sector | Private |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | Childhood Arthritis and Rheumatology Research Alliance (CARRA) |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | Cincinnati Children's Hospital Medical Center |
| Country | United States |
| Sector | Hospitals |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | Duke University Medical Centre |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | European Medicines Agency |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | F. Hoffmann-La Roche AG |
| Country | Global |
| Sector | Private |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | Johnson & Johnson |
| Department | Janssen-Cilag |
| Country | Global |
| Sector | Private |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | Leibniz Association |
| Department | German Rheumatism Research Centre |
| Country | Germany |
| Sector | Charity/Non Profit |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | Murdoch Children's Research Institute |
| Country | Australia |
| Sector | Academic/University |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | Pediatric Rheumatology INternational Trials Organisation (PRINTO) |
| Country | Italy |
| Sector | Charity/Non Profit |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | Pfizer Ltd |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | Stanford University |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | The Hospital for Sick Children (SickKids) |
| Country | Canada |
| Sector | Hospitals |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | UCAN (Understanding Childhood Arthritis Network) |
| Department | Ucan Utrecht |
| Country | Netherlands |
| Sector | Charity/Non Profit |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | UCAN (Understanding Childhood Arthritis Network) |
| Country | Canada |
| Sector | Charity/Non Profit |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | UCL Business |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | University of Cambridge |
| Department | MRC Biostatistics Unit |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | University of Liverpool |
| Department | Institute of Translational Medicine |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | University of Manchester |
| Department | Arthritis Research UK Centre for Epidemiology |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | University of Münster |
| Department | Department of Pediatric Rheumatology and Immunology |
| Country | Germany |
| Sector | Academic/University |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | Versus Arthritis |
| Department | Arthritis Research UK Centre for Genetics and Genomics |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | Versus Arthritis |
| Department | Maximising Therapeutic Utility for Rheumatoid Arthritis |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CHART-UCAN-U: Towards Stratified Medicine in JIA, International Working Meeting (updated for 2016 - 2017) |
| Organisation | William Harvey Research Foundation |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | - Formulated meeting concept and agenda - Collated and analysed barriers and key questions in JIA International research from each party - Led on logistics, planning, and general meeting admin - Chair and facilitate meeting sessions - Developed template laboratory SOPs for International use with JIA research samples (DNA, PBMC, PLASMA, SERUM), accompanied by an international comparison task - Planned and execute a world café with 3 stations - 1. Overcoming hurdles of data and sample sharing. 2. Overcoming hurdles in alignment of datasets 3. Overcoming hurdles in bio-specimen collection and sharing - Organized key note speeches in examples of stratified medicine in rheumatoid arthritis and other diseases (MATURA, TRANSMART and University of Cambridge MRC Biostatistics Unit) - Gained support from CHART MICA industrial partners for meeting, and further meeting grant (Abbvie) |
| Collaborator Contribution | - Supported meeting with provision of grants - Completed pre-meeting work to help with planning and agenda - Fed opinions and expertise into development of 3 key outstanding questions in JIA strat medicine research - Represented at the meeting to work towards meeting goals below: 1. Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. 2. Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples 3. Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA |
| Impact | In previous submission period (March 15 - March 16) this meeting was about to take place. With the following anticipated outcomes listed: 1. International agreement to prioritise Stratified medicine in JIA, with tools and SOPs for widespread adoption, and with UK taking a lead role ion this initiative 2. Growing partnership with Industry partners to facilitate collaborative discovery science in biomarkers for use in JIA 3. International consensus on priority studies and rolling out of multi Centre new collaborations For this submission period (March 16 - March 17) we can report that these anticipated outcomes were met. A new international study (PRECEDE - see entry in this section) was set up; a declaration of collaborative research (The London Declaration) was signed by all attending parties and provided a stimulus for collaborative JIA research internationally. A paper about the meeting is in development, and the results of this meeting have been shared at PReS 2016 (see abstracts under publications section), and other smaller network meetings across North America, such as CARRA. The meeting also included a round table discussion with the CHART pharma partners, Pfizer, Roche, Janssen and Abbvie who are continuing to support this work through partnership on the CLUSTER bid (see CLUSTER Consortium entry under collaborations and partnerships). |
| Start Year | 2015 |
| Description | CLUSTER Consortium Bid |
| Organisation | AbbVie Inc |
| Country | United States |
| Sector | Private |
| PI Contribution | Building on CHART, we have brought together a new UK wide Consortium, CLUSTER (Childhood Arthritis and its Associated Uveitis: Stratification through endotypes and mechanism to deliver benefit) with a multi-disciplinary group of investigators. Chief Investigator: Professor LR Wedderburn, UCL GOS Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust; co-lead: Professor W Thomson, University of Manchester. An outline bid was submitted to the MRC Stratified medicine call, which has now been invited to proceed to a full application. CLUSTER will include multi-disciplinary expertise in clinical, molecular, genetic, and immunological deep phenotyping, statistics, bioinformatics, and stratified medicine, UK leaders in paediatric rheumatology and ophthalmology, and those designing and delivering clinical trials in JIA and its associated uveitis. The overall goal of CLUSTER is to define 'endotypes' (or 'strata') of childhood arthritis and JIA-uveitis, with associated prognostic biomarkers of treatment response and disease course, and integrate these to generate stratification algorithms to facilitate targeted treatment decisions, leading to earlier effective control of inflammation, improved outcomes, reduced exposure to side effects from ineffective therapy and long term health care savings. |
| Collaborator Contribution | The partners listed above bring together the required multi-disciplinary expertise described above, represent the current CHART partner study cohorts as well as bringing in additional new clinical trial cohorts in Uveitis. The partners extend our PPIE networking opportunities and clinical infrastructure nationally. |
| Impact | - Outline Bid to MRC (Nov 2016) - Pilot Data exploration starting with proteomic and RNA seq work across the cohorts (2017.) |
| Start Year | 2016 |
| Description | CLUSTER Consortium Bid |
| Organisation | F. Hoffmann-La Roche AG |
| Country | Global |
| Sector | Private |
| PI Contribution | Building on CHART, we have brought together a new UK wide Consortium, CLUSTER (Childhood Arthritis and its Associated Uveitis: Stratification through endotypes and mechanism to deliver benefit) with a multi-disciplinary group of investigators. Chief Investigator: Professor LR Wedderburn, UCL GOS Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust; co-lead: Professor W Thomson, University of Manchester. An outline bid was submitted to the MRC Stratified medicine call, which has now been invited to proceed to a full application. CLUSTER will include multi-disciplinary expertise in clinical, molecular, genetic, and immunological deep phenotyping, statistics, bioinformatics, and stratified medicine, UK leaders in paediatric rheumatology and ophthalmology, and those designing and delivering clinical trials in JIA and its associated uveitis. The overall goal of CLUSTER is to define 'endotypes' (or 'strata') of childhood arthritis and JIA-uveitis, with associated prognostic biomarkers of treatment response and disease course, and integrate these to generate stratification algorithms to facilitate targeted treatment decisions, leading to earlier effective control of inflammation, improved outcomes, reduced exposure to side effects from ineffective therapy and long term health care savings. |
| Collaborator Contribution | The partners listed above bring together the required multi-disciplinary expertise described above, represent the current CHART partner study cohorts as well as bringing in additional new clinical trial cohorts in Uveitis. The partners extend our PPIE networking opportunities and clinical infrastructure nationally. |
| Impact | - Outline Bid to MRC (Nov 2016) - Pilot Data exploration starting with proteomic and RNA seq work across the cohorts (2017.) |
| Start Year | 2016 |
| Description | CLUSTER Consortium Bid |
| Organisation | Great Ormond Street Hospital Children's Charity (GOSHCC) |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Building on CHART, we have brought together a new UK wide Consortium, CLUSTER (Childhood Arthritis and its Associated Uveitis: Stratification through endotypes and mechanism to deliver benefit) with a multi-disciplinary group of investigators. Chief Investigator: Professor LR Wedderburn, UCL GOS Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust; co-lead: Professor W Thomson, University of Manchester. An outline bid was submitted to the MRC Stratified medicine call, which has now been invited to proceed to a full application. CLUSTER will include multi-disciplinary expertise in clinical, molecular, genetic, and immunological deep phenotyping, statistics, bioinformatics, and stratified medicine, UK leaders in paediatric rheumatology and ophthalmology, and those designing and delivering clinical trials in JIA and its associated uveitis. The overall goal of CLUSTER is to define 'endotypes' (or 'strata') of childhood arthritis and JIA-uveitis, with associated prognostic biomarkers of treatment response and disease course, and integrate these to generate stratification algorithms to facilitate targeted treatment decisions, leading to earlier effective control of inflammation, improved outcomes, reduced exposure to side effects from ineffective therapy and long term health care savings. |
| Collaborator Contribution | The partners listed above bring together the required multi-disciplinary expertise described above, represent the current CHART partner study cohorts as well as bringing in additional new clinical trial cohorts in Uveitis. The partners extend our PPIE networking opportunities and clinical infrastructure nationally. |
| Impact | - Outline Bid to MRC (Nov 2016) - Pilot Data exploration starting with proteomic and RNA seq work across the cohorts (2017.) |
| Start Year | 2016 |
| Description | CLUSTER Consortium Bid |
| Organisation | Pfizer Inc |
| Country | United States |
| Sector | Private |
| PI Contribution | Building on CHART, we have brought together a new UK wide Consortium, CLUSTER (Childhood Arthritis and its Associated Uveitis: Stratification through endotypes and mechanism to deliver benefit) with a multi-disciplinary group of investigators. Chief Investigator: Professor LR Wedderburn, UCL GOS Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust; co-lead: Professor W Thomson, University of Manchester. An outline bid was submitted to the MRC Stratified medicine call, which has now been invited to proceed to a full application. CLUSTER will include multi-disciplinary expertise in clinical, molecular, genetic, and immunological deep phenotyping, statistics, bioinformatics, and stratified medicine, UK leaders in paediatric rheumatology and ophthalmology, and those designing and delivering clinical trials in JIA and its associated uveitis. The overall goal of CLUSTER is to define 'endotypes' (or 'strata') of childhood arthritis and JIA-uveitis, with associated prognostic biomarkers of treatment response and disease course, and integrate these to generate stratification algorithms to facilitate targeted treatment decisions, leading to earlier effective control of inflammation, improved outcomes, reduced exposure to side effects from ineffective therapy and long term health care savings. |
| Collaborator Contribution | The partners listed above bring together the required multi-disciplinary expertise described above, represent the current CHART partner study cohorts as well as bringing in additional new clinical trial cohorts in Uveitis. The partners extend our PPIE networking opportunities and clinical infrastructure nationally. |
| Impact | - Outline Bid to MRC (Nov 2016) - Pilot Data exploration starting with proteomic and RNA seq work across the cohorts (2017.) |
| Start Year | 2016 |
| Description | CLUSTER Consortium Bid |
| Organisation | UCB Pharma |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | Building on CHART, we have brought together a new UK wide Consortium, CLUSTER (Childhood Arthritis and its Associated Uveitis: Stratification through endotypes and mechanism to deliver benefit) with a multi-disciplinary group of investigators. Chief Investigator: Professor LR Wedderburn, UCL GOS Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust; co-lead: Professor W Thomson, University of Manchester. An outline bid was submitted to the MRC Stratified medicine call, which has now been invited to proceed to a full application. CLUSTER will include multi-disciplinary expertise in clinical, molecular, genetic, and immunological deep phenotyping, statistics, bioinformatics, and stratified medicine, UK leaders in paediatric rheumatology and ophthalmology, and those designing and delivering clinical trials in JIA and its associated uveitis. The overall goal of CLUSTER is to define 'endotypes' (or 'strata') of childhood arthritis and JIA-uveitis, with associated prognostic biomarkers of treatment response and disease course, and integrate these to generate stratification algorithms to facilitate targeted treatment decisions, leading to earlier effective control of inflammation, improved outcomes, reduced exposure to side effects from ineffective therapy and long term health care savings. |
| Collaborator Contribution | The partners listed above bring together the required multi-disciplinary expertise described above, represent the current CHART partner study cohorts as well as bringing in additional new clinical trial cohorts in Uveitis. The partners extend our PPIE networking opportunities and clinical infrastructure nationally. |
| Impact | - Outline Bid to MRC (Nov 2016) - Pilot Data exploration starting with proteomic and RNA seq work across the cohorts (2017.) |
| Start Year | 2016 |
| Description | CLUSTER Consortium Bid |
| Organisation | University Hospitals Bristol NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | Building on CHART, we have brought together a new UK wide Consortium, CLUSTER (Childhood Arthritis and its Associated Uveitis: Stratification through endotypes and mechanism to deliver benefit) with a multi-disciplinary group of investigators. Chief Investigator: Professor LR Wedderburn, UCL GOS Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust; co-lead: Professor W Thomson, University of Manchester. An outline bid was submitted to the MRC Stratified medicine call, which has now been invited to proceed to a full application. CLUSTER will include multi-disciplinary expertise in clinical, molecular, genetic, and immunological deep phenotyping, statistics, bioinformatics, and stratified medicine, UK leaders in paediatric rheumatology and ophthalmology, and those designing and delivering clinical trials in JIA and its associated uveitis. The overall goal of CLUSTER is to define 'endotypes' (or 'strata') of childhood arthritis and JIA-uveitis, with associated prognostic biomarkers of treatment response and disease course, and integrate these to generate stratification algorithms to facilitate targeted treatment decisions, leading to earlier effective control of inflammation, improved outcomes, reduced exposure to side effects from ineffective therapy and long term health care savings. |
| Collaborator Contribution | The partners listed above bring together the required multi-disciplinary expertise described above, represent the current CHART partner study cohorts as well as bringing in additional new clinical trial cohorts in Uveitis. The partners extend our PPIE networking opportunities and clinical infrastructure nationally. |
| Impact | - Outline Bid to MRC (Nov 2016) - Pilot Data exploration starting with proteomic and RNA seq work across the cohorts (2017.) |
| Start Year | 2016 |
| Description | CLUSTER Consortium Bid |
| Organisation | University of Bristol |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Building on CHART, we have brought together a new UK wide Consortium, CLUSTER (Childhood Arthritis and its Associated Uveitis: Stratification through endotypes and mechanism to deliver benefit) with a multi-disciplinary group of investigators. Chief Investigator: Professor LR Wedderburn, UCL GOS Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust; co-lead: Professor W Thomson, University of Manchester. An outline bid was submitted to the MRC Stratified medicine call, which has now been invited to proceed to a full application. CLUSTER will include multi-disciplinary expertise in clinical, molecular, genetic, and immunological deep phenotyping, statistics, bioinformatics, and stratified medicine, UK leaders in paediatric rheumatology and ophthalmology, and those designing and delivering clinical trials in JIA and its associated uveitis. The overall goal of CLUSTER is to define 'endotypes' (or 'strata') of childhood arthritis and JIA-uveitis, with associated prognostic biomarkers of treatment response and disease course, and integrate these to generate stratification algorithms to facilitate targeted treatment decisions, leading to earlier effective control of inflammation, improved outcomes, reduced exposure to side effects from ineffective therapy and long term health care savings. |
| Collaborator Contribution | The partners listed above bring together the required multi-disciplinary expertise described above, represent the current CHART partner study cohorts as well as bringing in additional new clinical trial cohorts in Uveitis. The partners extend our PPIE networking opportunities and clinical infrastructure nationally. |
| Impact | - Outline Bid to MRC (Nov 2016) - Pilot Data exploration starting with proteomic and RNA seq work across the cohorts (2017.) |
| Start Year | 2016 |
| Description | CLUSTER Consortium Bid |
| Organisation | University of Cambridge |
| Department | Department of Haematology |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Building on CHART, we have brought together a new UK wide Consortium, CLUSTER (Childhood Arthritis and its Associated Uveitis: Stratification through endotypes and mechanism to deliver benefit) with a multi-disciplinary group of investigators. Chief Investigator: Professor LR Wedderburn, UCL GOS Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust; co-lead: Professor W Thomson, University of Manchester. An outline bid was submitted to the MRC Stratified medicine call, which has now been invited to proceed to a full application. CLUSTER will include multi-disciplinary expertise in clinical, molecular, genetic, and immunological deep phenotyping, statistics, bioinformatics, and stratified medicine, UK leaders in paediatric rheumatology and ophthalmology, and those designing and delivering clinical trials in JIA and its associated uveitis. The overall goal of CLUSTER is to define 'endotypes' (or 'strata') of childhood arthritis and JIA-uveitis, with associated prognostic biomarkers of treatment response and disease course, and integrate these to generate stratification algorithms to facilitate targeted treatment decisions, leading to earlier effective control of inflammation, improved outcomes, reduced exposure to side effects from ineffective therapy and long term health care savings. |
| Collaborator Contribution | The partners listed above bring together the required multi-disciplinary expertise described above, represent the current CHART partner study cohorts as well as bringing in additional new clinical trial cohorts in Uveitis. The partners extend our PPIE networking opportunities and clinical infrastructure nationally. |
| Impact | - Outline Bid to MRC (Nov 2016) - Pilot Data exploration starting with proteomic and RNA seq work across the cohorts (2017.) |
| Start Year | 2016 |
| Description | CLUSTER Consortium Bid |
| Organisation | University of Liverpool |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Building on CHART, we have brought together a new UK wide Consortium, CLUSTER (Childhood Arthritis and its Associated Uveitis: Stratification through endotypes and mechanism to deliver benefit) with a multi-disciplinary group of investigators. Chief Investigator: Professor LR Wedderburn, UCL GOS Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust; co-lead: Professor W Thomson, University of Manchester. An outline bid was submitted to the MRC Stratified medicine call, which has now been invited to proceed to a full application. CLUSTER will include multi-disciplinary expertise in clinical, molecular, genetic, and immunological deep phenotyping, statistics, bioinformatics, and stratified medicine, UK leaders in paediatric rheumatology and ophthalmology, and those designing and delivering clinical trials in JIA and its associated uveitis. The overall goal of CLUSTER is to define 'endotypes' (or 'strata') of childhood arthritis and JIA-uveitis, with associated prognostic biomarkers of treatment response and disease course, and integrate these to generate stratification algorithms to facilitate targeted treatment decisions, leading to earlier effective control of inflammation, improved outcomes, reduced exposure to side effects from ineffective therapy and long term health care savings. |
| Collaborator Contribution | The partners listed above bring together the required multi-disciplinary expertise described above, represent the current CHART partner study cohorts as well as bringing in additional new clinical trial cohorts in Uveitis. The partners extend our PPIE networking opportunities and clinical infrastructure nationally. |
| Impact | - Outline Bid to MRC (Nov 2016) - Pilot Data exploration starting with proteomic and RNA seq work across the cohorts (2017.) |
| Start Year | 2016 |
| Description | CLUSTER Consortium Bid |
| Organisation | University of Manchester |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Building on CHART, we have brought together a new UK wide Consortium, CLUSTER (Childhood Arthritis and its Associated Uveitis: Stratification through endotypes and mechanism to deliver benefit) with a multi-disciplinary group of investigators. Chief Investigator: Professor LR Wedderburn, UCL GOS Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust; co-lead: Professor W Thomson, University of Manchester. An outline bid was submitted to the MRC Stratified medicine call, which has now been invited to proceed to a full application. CLUSTER will include multi-disciplinary expertise in clinical, molecular, genetic, and immunological deep phenotyping, statistics, bioinformatics, and stratified medicine, UK leaders in paediatric rheumatology and ophthalmology, and those designing and delivering clinical trials in JIA and its associated uveitis. The overall goal of CLUSTER is to define 'endotypes' (or 'strata') of childhood arthritis and JIA-uveitis, with associated prognostic biomarkers of treatment response and disease course, and integrate these to generate stratification algorithms to facilitate targeted treatment decisions, leading to earlier effective control of inflammation, improved outcomes, reduced exposure to side effects from ineffective therapy and long term health care savings. |
| Collaborator Contribution | The partners listed above bring together the required multi-disciplinary expertise described above, represent the current CHART partner study cohorts as well as bringing in additional new clinical trial cohorts in Uveitis. The partners extend our PPIE networking opportunities and clinical infrastructure nationally. |
| Impact | - Outline Bid to MRC (Nov 2016) - Pilot Data exploration starting with proteomic and RNA seq work across the cohorts (2017.) |
| Start Year | 2016 |
| Description | CLUSTER JIA Stratified Medicine Consortium |
| Organisation | Queen Mary University of London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Building on CHART, we have brought together a new UK wide Consortium, CLUSTER (Childhood Arthritis and its Associated Uveitis: Stratification through endotypes and mechanism to deliver benefit) with a multi-disciplinary group of investigators. Chief Investigator: Professor LR Wedderburn, UCL GOS Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust; co-lead: Professor W Thomson, University of Manchester. This application to the MRC Stratified medicine call, has been successful. CLUSTER will include multi-disciplinary expertise in clinical, molecular, genetic, and immunological deep phenotyping, statistics, bioinformatics, and stratified medicine, UK leaders in paediatric rheumatology and ophthalmology, and those designing and delivering clinical trials in JIA and its associated uveitis. The overall goal of CLUSTER is to define 'endotypes' (or 'strata') of childhood arthritis and JIA-uveitis, with associated prognostic biomarkers of treatment response and disease course, and integrate these to generate stratification algorithms to facilitate targeted treatment decisions, leading to earlier effective control of inflammation, improved outcomes, reduced exposure to side effects from ineffective therapy and long term health care savings. |
| Collaborator Contribution | The partners listed above bring together the required multi-disciplinary expertise described above, represent the current CHART partner study cohorts as well as bringing in additional new clinical trial cohorts in Uveitis. The partners extend our PPIE networking opportunities and clinical infrastructure nationally. |
| Impact | 2018: This partnership will commence once the grant opens in 2018, so as yet there have been no outputs however this continues to bring together researchers, industry, charities and patients to further the work of CHART in defining strata for JIA treatment. 2019 :UPDATE: CLUSTER has now launched, recruited the core team, started to establish its new Consortium Nationally. All committees and consortium contracts are in place . Work has begun using longitudinal data analyses . |
| Start Year | 2018 |
| Description | CLUSTER JIA Stratified Medicine Consortium |
| Organisation | University Hospitals Bristol NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | Building on CHART, we have brought together a new UK wide Consortium, CLUSTER (Childhood Arthritis and its Associated Uveitis: Stratification through endotypes and mechanism to deliver benefit) with a multi-disciplinary group of investigators. Chief Investigator: Professor LR Wedderburn, UCL GOS Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust; co-lead: Professor W Thomson, University of Manchester. This application to the MRC Stratified medicine call, has been successful. CLUSTER will include multi-disciplinary expertise in clinical, molecular, genetic, and immunological deep phenotyping, statistics, bioinformatics, and stratified medicine, UK leaders in paediatric rheumatology and ophthalmology, and those designing and delivering clinical trials in JIA and its associated uveitis. The overall goal of CLUSTER is to define 'endotypes' (or 'strata') of childhood arthritis and JIA-uveitis, with associated prognostic biomarkers of treatment response and disease course, and integrate these to generate stratification algorithms to facilitate targeted treatment decisions, leading to earlier effective control of inflammation, improved outcomes, reduced exposure to side effects from ineffective therapy and long term health care savings. |
| Collaborator Contribution | The partners listed above bring together the required multi-disciplinary expertise described above, represent the current CHART partner study cohorts as well as bringing in additional new clinical trial cohorts in Uveitis. The partners extend our PPIE networking opportunities and clinical infrastructure nationally. |
| Impact | 2018: This partnership will commence once the grant opens in 2018, so as yet there have been no outputs however this continues to bring together researchers, industry, charities and patients to further the work of CHART in defining strata for JIA treatment. 2019 :UPDATE: CLUSTER has now launched, recruited the core team, started to establish its new Consortium Nationally. All committees and consortium contracts are in place . Work has begun using longitudinal data analyses . |
| Start Year | 2018 |
| Description | CLUSTER JIA Stratified Medicine Consortium |
| Organisation | University of Cambridge |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Building on CHART, we have brought together a new UK wide Consortium, CLUSTER (Childhood Arthritis and its Associated Uveitis: Stratification through endotypes and mechanism to deliver benefit) with a multi-disciplinary group of investigators. Chief Investigator: Professor LR Wedderburn, UCL GOS Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust; co-lead: Professor W Thomson, University of Manchester. This application to the MRC Stratified medicine call, has been successful. CLUSTER will include multi-disciplinary expertise in clinical, molecular, genetic, and immunological deep phenotyping, statistics, bioinformatics, and stratified medicine, UK leaders in paediatric rheumatology and ophthalmology, and those designing and delivering clinical trials in JIA and its associated uveitis. The overall goal of CLUSTER is to define 'endotypes' (or 'strata') of childhood arthritis and JIA-uveitis, with associated prognostic biomarkers of treatment response and disease course, and integrate these to generate stratification algorithms to facilitate targeted treatment decisions, leading to earlier effective control of inflammation, improved outcomes, reduced exposure to side effects from ineffective therapy and long term health care savings. |
| Collaborator Contribution | The partners listed above bring together the required multi-disciplinary expertise described above, represent the current CHART partner study cohorts as well as bringing in additional new clinical trial cohorts in Uveitis. The partners extend our PPIE networking opportunities and clinical infrastructure nationally. |
| Impact | 2018: This partnership will commence once the grant opens in 2018, so as yet there have been no outputs however this continues to bring together researchers, industry, charities and patients to further the work of CHART in defining strata for JIA treatment. 2019 :UPDATE: CLUSTER has now launched, recruited the core team, started to establish its new Consortium Nationally. All committees and consortium contracts are in place . Work has begun using longitudinal data analyses . |
| Start Year | 2018 |
| Description | CLUSTER JIA Stratified Medicine Consortium |
| Organisation | University of Liverpool |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Building on CHART, we have brought together a new UK wide Consortium, CLUSTER (Childhood Arthritis and its Associated Uveitis: Stratification through endotypes and mechanism to deliver benefit) with a multi-disciplinary group of investigators. Chief Investigator: Professor LR Wedderburn, UCL GOS Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust; co-lead: Professor W Thomson, University of Manchester. This application to the MRC Stratified medicine call, has been successful. CLUSTER will include multi-disciplinary expertise in clinical, molecular, genetic, and immunological deep phenotyping, statistics, bioinformatics, and stratified medicine, UK leaders in paediatric rheumatology and ophthalmology, and those designing and delivering clinical trials in JIA and its associated uveitis. The overall goal of CLUSTER is to define 'endotypes' (or 'strata') of childhood arthritis and JIA-uveitis, with associated prognostic biomarkers of treatment response and disease course, and integrate these to generate stratification algorithms to facilitate targeted treatment decisions, leading to earlier effective control of inflammation, improved outcomes, reduced exposure to side effects from ineffective therapy and long term health care savings. |
| Collaborator Contribution | The partners listed above bring together the required multi-disciplinary expertise described above, represent the current CHART partner study cohorts as well as bringing in additional new clinical trial cohorts in Uveitis. The partners extend our PPIE networking opportunities and clinical infrastructure nationally. |
| Impact | 2018: This partnership will commence once the grant opens in 2018, so as yet there have been no outputs however this continues to bring together researchers, industry, charities and patients to further the work of CHART in defining strata for JIA treatment. 2019 :UPDATE: CLUSTER has now launched, recruited the core team, started to establish its new Consortium Nationally. All committees and consortium contracts are in place . Work has begun using longitudinal data analyses . |
| Start Year | 2018 |
| Description | CLUSTER JIA Stratified Medicine Consortium |
| Organisation | University of Manchester |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Building on CHART, we have brought together a new UK wide Consortium, CLUSTER (Childhood Arthritis and its Associated Uveitis: Stratification through endotypes and mechanism to deliver benefit) with a multi-disciplinary group of investigators. Chief Investigator: Professor LR Wedderburn, UCL GOS Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust; co-lead: Professor W Thomson, University of Manchester. This application to the MRC Stratified medicine call, has been successful. CLUSTER will include multi-disciplinary expertise in clinical, molecular, genetic, and immunological deep phenotyping, statistics, bioinformatics, and stratified medicine, UK leaders in paediatric rheumatology and ophthalmology, and those designing and delivering clinical trials in JIA and its associated uveitis. The overall goal of CLUSTER is to define 'endotypes' (or 'strata') of childhood arthritis and JIA-uveitis, with associated prognostic biomarkers of treatment response and disease course, and integrate these to generate stratification algorithms to facilitate targeted treatment decisions, leading to earlier effective control of inflammation, improved outcomes, reduced exposure to side effects from ineffective therapy and long term health care savings. |
| Collaborator Contribution | The partners listed above bring together the required multi-disciplinary expertise described above, represent the current CHART partner study cohorts as well as bringing in additional new clinical trial cohorts in Uveitis. The partners extend our PPIE networking opportunities and clinical infrastructure nationally. |
| Impact | 2018: This partnership will commence once the grant opens in 2018, so as yet there have been no outputs however this continues to bring together researchers, industry, charities and patients to further the work of CHART in defining strata for JIA treatment. 2019 :UPDATE: CLUSTER has now launched, recruited the core team, started to establish its new Consortium Nationally. All committees and consortium contracts are in place . Work has begun using longitudinal data analyses . |
| Start Year | 2018 |
| Description | Childhood Arthritis Response to Treatment Consortium (CHART): partnership to define stratified medicine tools for childhood inflammatory arthritis |
| Organisation | Barbara Ansell National Network for Adolescent Rheumatology |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Our research team at UCL are leading the large consortium ( CHART) for which we have been granted MRC funding. We have set up the collaborations and Consortium as above, as set out in the grant proposal The UCL team works closely with all the co-PIs and the database manager and is responsible for overall project planning - lead in organising Consortium meetings, keeping all stakeholders informed of workstreams and progress, ensure visability of CHART to public etc, interact with all stakeholders and support recruitment of new centres and cases to the consortium. The UCL team lead the Consortium, its, strategy , experimental plans, grant management, reports to funders, data management, consortium partnerships and dissemination, as well as consortium agreements, and MTAs. |
| Collaborator Contribution | Both Manchester and Liverpool colleagues are co -investigators in the new consortium. The Consortium has brought together the 4 large JIA cohort studies in the UK representing around 4000 cases of JIA , to enable studies of stratified medicine in JIA. The multiple stakeholders and partners support synergy across the UK and further afield to ensure that recording of response outcome data using standardised methods becomes part of routine clinical care to allow every case of JIA to contribute to the evidence base for a stratified approach to treatment, and encourage rapid patient benefit and facilitate the dispersion of new approaches/etc. found across their connecting communities. International Networks (PRINTO, Pharmachild, UCAN) : data sharing to allow inclusion of very large numbers of cases and to bring benefit to children beyond the UK Industrial partners - JanssenCilag will support establishing TranSMART platform for data integration. Pfizer will supply expertise in bioinformatics and pathway analysis. Roche will provide genotype data. Farr Institute - links to e-health research will allow us to explore use of long term outcome data and capture primary care data in the future BSPAR,CCAA - enable CHART to actively engage with patients and families affected by JIA, to utilise BSPAR-et study data and liaise with the clinical affairs committee SPARKS - provide ongoing research grant Utrecht, Prague, Queens University Belfast, Birmingham Children's hospital etc. - data sharing and recruitment BANNAR - expertise on extending cohorts to Adolescent age range Representatives from all stakeholders will also be involved in the CHART Steering Committee which will meet approx twice a year. |
| Impact | Initial work has been completed : CHART Consortium established; Consortium Management group set up Clinical data, lab SOP and sample harmonization across 4 large cohort JIA UK studies (BSPAR-et, BCRD, CHARMS and CAPS.) has been achieved This collaboration involves input from charities, international networks, partners in industry, patient and public involvement; as well as academic collaborators across data management, paediatric, arthritis, genetics and genomic disciplines. |
| Start Year | 2014 |
| Description | Childhood Arthritis Response to Treatment Consortium (CHART): partnership to define stratified medicine tools for childhood inflammatory arthritis |
| Organisation | British Society for Paediatric and Adolescent Rheumatology (BSPAR) |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Our research team at UCL are leading the large consortium ( CHART) for which we have been granted MRC funding. We have set up the collaborations and Consortium as above, as set out in the grant proposal The UCL team works closely with all the co-PIs and the database manager and is responsible for overall project planning - lead in organising Consortium meetings, keeping all stakeholders informed of workstreams and progress, ensure visability of CHART to public etc, interact with all stakeholders and support recruitment of new centres and cases to the consortium. The UCL team lead the Consortium, its, strategy , experimental plans, grant management, reports to funders, data management, consortium partnerships and dissemination, as well as consortium agreements, and MTAs. |
| Collaborator Contribution | Both Manchester and Liverpool colleagues are co -investigators in the new consortium. The Consortium has brought together the 4 large JIA cohort studies in the UK representing around 4000 cases of JIA , to enable studies of stratified medicine in JIA. The multiple stakeholders and partners support synergy across the UK and further afield to ensure that recording of response outcome data using standardised methods becomes part of routine clinical care to allow every case of JIA to contribute to the evidence base for a stratified approach to treatment, and encourage rapid patient benefit and facilitate the dispersion of new approaches/etc. found across their connecting communities. International Networks (PRINTO, Pharmachild, UCAN) : data sharing to allow inclusion of very large numbers of cases and to bring benefit to children beyond the UK Industrial partners - JanssenCilag will support establishing TranSMART platform for data integration. Pfizer will supply expertise in bioinformatics and pathway analysis. Roche will provide genotype data. Farr Institute - links to e-health research will allow us to explore use of long term outcome data and capture primary care data in the future BSPAR,CCAA - enable CHART to actively engage with patients and families affected by JIA, to utilise BSPAR-et study data and liaise with the clinical affairs committee SPARKS - provide ongoing research grant Utrecht, Prague, Queens University Belfast, Birmingham Children's hospital etc. - data sharing and recruitment BANNAR - expertise on extending cohorts to Adolescent age range Representatives from all stakeholders will also be involved in the CHART Steering Committee which will meet approx twice a year. |
| Impact | Initial work has been completed : CHART Consortium established; Consortium Management group set up Clinical data, lab SOP and sample harmonization across 4 large cohort JIA UK studies (BSPAR-et, BCRD, CHARMS and CAPS.) has been achieved This collaboration involves input from charities, international networks, partners in industry, patient and public involvement; as well as academic collaborators across data management, paediatric, arthritis, genetics and genomic disciplines. |
| Start Year | 2014 |
| Description | Childhood Arthritis Response to Treatment Consortium (CHART): partnership to define stratified medicine tools for childhood inflammatory arthritis |
| Organisation | Charles University |
| Country | Czech Republic |
| Sector | Academic/University |
| PI Contribution | Our research team at UCL are leading the large consortium ( CHART) for which we have been granted MRC funding. We have set up the collaborations and Consortium as above, as set out in the grant proposal The UCL team works closely with all the co-PIs and the database manager and is responsible for overall project planning - lead in organising Consortium meetings, keeping all stakeholders informed of workstreams and progress, ensure visability of CHART to public etc, interact with all stakeholders and support recruitment of new centres and cases to the consortium. The UCL team lead the Consortium, its, strategy , experimental plans, grant management, reports to funders, data management, consortium partnerships and dissemination, as well as consortium agreements, and MTAs. |
| Collaborator Contribution | Both Manchester and Liverpool colleagues are co -investigators in the new consortium. The Consortium has brought together the 4 large JIA cohort studies in the UK representing around 4000 cases of JIA , to enable studies of stratified medicine in JIA. The multiple stakeholders and partners support synergy across the UK and further afield to ensure that recording of response outcome data using standardised methods becomes part of routine clinical care to allow every case of JIA to contribute to the evidence base for a stratified approach to treatment, and encourage rapid patient benefit and facilitate the dispersion of new approaches/etc. found across their connecting communities. International Networks (PRINTO, Pharmachild, UCAN) : data sharing to allow inclusion of very large numbers of cases and to bring benefit to children beyond the UK Industrial partners - JanssenCilag will support establishing TranSMART platform for data integration. Pfizer will supply expertise in bioinformatics and pathway analysis. Roche will provide genotype data. Farr Institute - links to e-health research will allow us to explore use of long term outcome data and capture primary care data in the future BSPAR,CCAA - enable CHART to actively engage with patients and families affected by JIA, to utilise BSPAR-et study data and liaise with the clinical affairs committee SPARKS - provide ongoing research grant Utrecht, Prague, Queens University Belfast, Birmingham Children's hospital etc. - data sharing and recruitment BANNAR - expertise on extending cohorts to Adolescent age range Representatives from all stakeholders will also be involved in the CHART Steering Committee which will meet approx twice a year. |
| Impact | Initial work has been completed : CHART Consortium established; Consortium Management group set up Clinical data, lab SOP and sample harmonization across 4 large cohort JIA UK studies (BSPAR-et, BCRD, CHARMS and CAPS.) has been achieved This collaboration involves input from charities, international networks, partners in industry, patient and public involvement; as well as academic collaborators across data management, paediatric, arthritis, genetics and genomic disciplines. |
| Start Year | 2014 |
| Description | Childhood Arthritis Response to Treatment Consortium (CHART): partnership to define stratified medicine tools for childhood inflammatory arthritis |
| Organisation | Children's Chronic Arthritis Association (CCAA) |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Our research team at UCL are leading the large consortium ( CHART) for which we have been granted MRC funding. We have set up the collaborations and Consortium as above, as set out in the grant proposal The UCL team works closely with all the co-PIs and the database manager and is responsible for overall project planning - lead in organising Consortium meetings, keeping all stakeholders informed of workstreams and progress, ensure visability of CHART to public etc, interact with all stakeholders and support recruitment of new centres and cases to the consortium. The UCL team lead the Consortium, its, strategy , experimental plans, grant management, reports to funders, data management, consortium partnerships and dissemination, as well as consortium agreements, and MTAs. |
| Collaborator Contribution | Both Manchester and Liverpool colleagues are co -investigators in the new consortium. The Consortium has brought together the 4 large JIA cohort studies in the UK representing around 4000 cases of JIA , to enable studies of stratified medicine in JIA. The multiple stakeholders and partners support synergy across the UK and further afield to ensure that recording of response outcome data using standardised methods becomes part of routine clinical care to allow every case of JIA to contribute to the evidence base for a stratified approach to treatment, and encourage rapid patient benefit and facilitate the dispersion of new approaches/etc. found across their connecting communities. International Networks (PRINTO, Pharmachild, UCAN) : data sharing to allow inclusion of very large numbers of cases and to bring benefit to children beyond the UK Industrial partners - JanssenCilag will support establishing TranSMART platform for data integration. Pfizer will supply expertise in bioinformatics and pathway analysis. Roche will provide genotype data. Farr Institute - links to e-health research will allow us to explore use of long term outcome data and capture primary care data in the future BSPAR,CCAA - enable CHART to actively engage with patients and families affected by JIA, to utilise BSPAR-et study data and liaise with the clinical affairs committee SPARKS - provide ongoing research grant Utrecht, Prague, Queens University Belfast, Birmingham Children's hospital etc. - data sharing and recruitment BANNAR - expertise on extending cohorts to Adolescent age range Representatives from all stakeholders will also be involved in the CHART Steering Committee which will meet approx twice a year. |
| Impact | Initial work has been completed : CHART Consortium established; Consortium Management group set up Clinical data, lab SOP and sample harmonization across 4 large cohort JIA UK studies (BSPAR-et, BCRD, CHARMS and CAPS.) has been achieved This collaboration involves input from charities, international networks, partners in industry, patient and public involvement; as well as academic collaborators across data management, paediatric, arthritis, genetics and genomic disciplines. |
| Start Year | 2014 |
| Description | Childhood Arthritis Response to Treatment Consortium (CHART): partnership to define stratified medicine tools for childhood inflammatory arthritis |
| Organisation | Cincinnati Children's Hospital Medical Center |
| Country | United States |
| Sector | Hospitals |
| PI Contribution | Our research team at UCL are leading the large consortium ( CHART) for which we have been granted MRC funding. We have set up the collaborations and Consortium as above, as set out in the grant proposal The UCL team works closely with all the co-PIs and the database manager and is responsible for overall project planning - lead in organising Consortium meetings, keeping all stakeholders informed of workstreams and progress, ensure visability of CHART to public etc, interact with all stakeholders and support recruitment of new centres and cases to the consortium. The UCL team lead the Consortium, its, strategy , experimental plans, grant management, reports to funders, data management, consortium partnerships and dissemination, as well as consortium agreements, and MTAs. |
| Collaborator Contribution | Both Manchester and Liverpool colleagues are co -investigators in the new consortium. The Consortium has brought together the 4 large JIA cohort studies in the UK representing around 4000 cases of JIA , to enable studies of stratified medicine in JIA. The multiple stakeholders and partners support synergy across the UK and further afield to ensure that recording of response outcome data using standardised methods becomes part of routine clinical care to allow every case of JIA to contribute to the evidence base for a stratified approach to treatment, and encourage rapid patient benefit and facilitate the dispersion of new approaches/etc. found across their connecting communities. International Networks (PRINTO, Pharmachild, UCAN) : data sharing to allow inclusion of very large numbers of cases and to bring benefit to children beyond the UK Industrial partners - JanssenCilag will support establishing TranSMART platform for data integration. Pfizer will supply expertise in bioinformatics and pathway analysis. Roche will provide genotype data. Farr Institute - links to e-health research will allow us to explore use of long term outcome data and capture primary care data in the future BSPAR,CCAA - enable CHART to actively engage with patients and families affected by JIA, to utilise BSPAR-et study data and liaise with the clinical affairs committee SPARKS - provide ongoing research grant Utrecht, Prague, Queens University Belfast, Birmingham Children's hospital etc. - data sharing and recruitment BANNAR - expertise on extending cohorts to Adolescent age range Representatives from all stakeholders will also be involved in the CHART Steering Committee which will meet approx twice a year. |
| Impact | Initial work has been completed : CHART Consortium established; Consortium Management group set up Clinical data, lab SOP and sample harmonization across 4 large cohort JIA UK studies (BSPAR-et, BCRD, CHARMS and CAPS.) has been achieved This collaboration involves input from charities, international networks, partners in industry, patient and public involvement; as well as academic collaborators across data management, paediatric, arthritis, genetics and genomic disciplines. |
| Start Year | 2014 |
| Description | Childhood Arthritis Response to Treatment Consortium (CHART): partnership to define stratified medicine tools for childhood inflammatory arthritis |
| Organisation | Farr Institute of Health Informatics Research |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Our research team at UCL are leading the large consortium ( CHART) for which we have been granted MRC funding. We have set up the collaborations and Consortium as above, as set out in the grant proposal The UCL team works closely with all the co-PIs and the database manager and is responsible for overall project planning - lead in organising Consortium meetings, keeping all stakeholders informed of workstreams and progress, ensure visability of CHART to public etc, interact with all stakeholders and support recruitment of new centres and cases to the consortium. The UCL team lead the Consortium, its, strategy , experimental plans, grant management, reports to funders, data management, consortium partnerships and dissemination, as well as consortium agreements, and MTAs. |
| Collaborator Contribution | Both Manchester and Liverpool colleagues are co -investigators in the new consortium. The Consortium has brought together the 4 large JIA cohort studies in the UK representing around 4000 cases of JIA , to enable studies of stratified medicine in JIA. The multiple stakeholders and partners support synergy across the UK and further afield to ensure that recording of response outcome data using standardised methods becomes part of routine clinical care to allow every case of JIA to contribute to the evidence base for a stratified approach to treatment, and encourage rapid patient benefit and facilitate the dispersion of new approaches/etc. found across their connecting communities. International Networks (PRINTO, Pharmachild, UCAN) : data sharing to allow inclusion of very large numbers of cases and to bring benefit to children beyond the UK Industrial partners - JanssenCilag will support establishing TranSMART platform for data integration. Pfizer will supply expertise in bioinformatics and pathway analysis. Roche will provide genotype data. Farr Institute - links to e-health research will allow us to explore use of long term outcome data and capture primary care data in the future BSPAR,CCAA - enable CHART to actively engage with patients and families affected by JIA, to utilise BSPAR-et study data and liaise with the clinical affairs committee SPARKS - provide ongoing research grant Utrecht, Prague, Queens University Belfast, Birmingham Children's hospital etc. - data sharing and recruitment BANNAR - expertise on extending cohorts to Adolescent age range Representatives from all stakeholders will also be involved in the CHART Steering Committee which will meet approx twice a year. |
| Impact | Initial work has been completed : CHART Consortium established; Consortium Management group set up Clinical data, lab SOP and sample harmonization across 4 large cohort JIA UK studies (BSPAR-et, BCRD, CHARMS and CAPS.) has been achieved This collaboration involves input from charities, international networks, partners in industry, patient and public involvement; as well as academic collaborators across data management, paediatric, arthritis, genetics and genomic disciplines. |
| Start Year | 2014 |
| Description | Childhood Arthritis Response to Treatment Consortium (CHART): partnership to define stratified medicine tools for childhood inflammatory arthritis |
| Organisation | Johnson & Johnson |
| Department | Janssen-Cilag |
| Country | Global |
| Sector | Private |
| PI Contribution | Our research team at UCL are leading the large consortium ( CHART) for which we have been granted MRC funding. We have set up the collaborations and Consortium as above, as set out in the grant proposal The UCL team works closely with all the co-PIs and the database manager and is responsible for overall project planning - lead in organising Consortium meetings, keeping all stakeholders informed of workstreams and progress, ensure visability of CHART to public etc, interact with all stakeholders and support recruitment of new centres and cases to the consortium. The UCL team lead the Consortium, its, strategy , experimental plans, grant management, reports to funders, data management, consortium partnerships and dissemination, as well as consortium agreements, and MTAs. |
| Collaborator Contribution | Both Manchester and Liverpool colleagues are co -investigators in the new consortium. The Consortium has brought together the 4 large JIA cohort studies in the UK representing around 4000 cases of JIA , to enable studies of stratified medicine in JIA. The multiple stakeholders and partners support synergy across the UK and further afield to ensure that recording of response outcome data using standardised methods becomes part of routine clinical care to allow every case of JIA to contribute to the evidence base for a stratified approach to treatment, and encourage rapid patient benefit and facilitate the dispersion of new approaches/etc. found across their connecting communities. International Networks (PRINTO, Pharmachild, UCAN) : data sharing to allow inclusion of very large numbers of cases and to bring benefit to children beyond the UK Industrial partners - JanssenCilag will support establishing TranSMART platform for data integration. Pfizer will supply expertise in bioinformatics and pathway analysis. Roche will provide genotype data. Farr Institute - links to e-health research will allow us to explore use of long term outcome data and capture primary care data in the future BSPAR,CCAA - enable CHART to actively engage with patients and families affected by JIA, to utilise BSPAR-et study data and liaise with the clinical affairs committee SPARKS - provide ongoing research grant Utrecht, Prague, Queens University Belfast, Birmingham Children's hospital etc. - data sharing and recruitment BANNAR - expertise on extending cohorts to Adolescent age range Representatives from all stakeholders will also be involved in the CHART Steering Committee which will meet approx twice a year. |
| Impact | Initial work has been completed : CHART Consortium established; Consortium Management group set up Clinical data, lab SOP and sample harmonization across 4 large cohort JIA UK studies (BSPAR-et, BCRD, CHARMS and CAPS.) has been achieved This collaboration involves input from charities, international networks, partners in industry, patient and public involvement; as well as academic collaborators across data management, paediatric, arthritis, genetics and genomic disciplines. |
| Start Year | 2014 |
| Description | Childhood Arthritis Response to Treatment Consortium (CHART): partnership to define stratified medicine tools for childhood inflammatory arthritis |
| Organisation | Pediatric Rheumatology INternational Trials Organisation (PRINTO) |
| Country | Italy |
| Sector | Charity/Non Profit |
| PI Contribution | Our research team at UCL are leading the large consortium ( CHART) for which we have been granted MRC funding. We have set up the collaborations and Consortium as above, as set out in the grant proposal The UCL team works closely with all the co-PIs and the database manager and is responsible for overall project planning - lead in organising Consortium meetings, keeping all stakeholders informed of workstreams and progress, ensure visability of CHART to public etc, interact with all stakeholders and support recruitment of new centres and cases to the consortium. The UCL team lead the Consortium, its, strategy , experimental plans, grant management, reports to funders, data management, consortium partnerships and dissemination, as well as consortium agreements, and MTAs. |
| Collaborator Contribution | Both Manchester and Liverpool colleagues are co -investigators in the new consortium. The Consortium has brought together the 4 large JIA cohort studies in the UK representing around 4000 cases of JIA , to enable studies of stratified medicine in JIA. The multiple stakeholders and partners support synergy across the UK and further afield to ensure that recording of response outcome data using standardised methods becomes part of routine clinical care to allow every case of JIA to contribute to the evidence base for a stratified approach to treatment, and encourage rapid patient benefit and facilitate the dispersion of new approaches/etc. found across their connecting communities. International Networks (PRINTO, Pharmachild, UCAN) : data sharing to allow inclusion of very large numbers of cases and to bring benefit to children beyond the UK Industrial partners - JanssenCilag will support establishing TranSMART platform for data integration. Pfizer will supply expertise in bioinformatics and pathway analysis. Roche will provide genotype data. Farr Institute - links to e-health research will allow us to explore use of long term outcome data and capture primary care data in the future BSPAR,CCAA - enable CHART to actively engage with patients and families affected by JIA, to utilise BSPAR-et study data and liaise with the clinical affairs committee SPARKS - provide ongoing research grant Utrecht, Prague, Queens University Belfast, Birmingham Children's hospital etc. - data sharing and recruitment BANNAR - expertise on extending cohorts to Adolescent age range Representatives from all stakeholders will also be involved in the CHART Steering Committee which will meet approx twice a year. |
| Impact | Initial work has been completed : CHART Consortium established; Consortium Management group set up Clinical data, lab SOP and sample harmonization across 4 large cohort JIA UK studies (BSPAR-et, BCRD, CHARMS and CAPS.) has been achieved This collaboration involves input from charities, international networks, partners in industry, patient and public involvement; as well as academic collaborators across data management, paediatric, arthritis, genetics and genomic disciplines. |
| Start Year | 2014 |
| Description | Childhood Arthritis Response to Treatment Consortium (CHART): partnership to define stratified medicine tools for childhood inflammatory arthritis |
| Organisation | Pfizer Ltd |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | Our research team at UCL are leading the large consortium ( CHART) for which we have been granted MRC funding. We have set up the collaborations and Consortium as above, as set out in the grant proposal The UCL team works closely with all the co-PIs and the database manager and is responsible for overall project planning - lead in organising Consortium meetings, keeping all stakeholders informed of workstreams and progress, ensure visability of CHART to public etc, interact with all stakeholders and support recruitment of new centres and cases to the consortium. The UCL team lead the Consortium, its, strategy , experimental plans, grant management, reports to funders, data management, consortium partnerships and dissemination, as well as consortium agreements, and MTAs. |
| Collaborator Contribution | Both Manchester and Liverpool colleagues are co -investigators in the new consortium. The Consortium has brought together the 4 large JIA cohort studies in the UK representing around 4000 cases of JIA , to enable studies of stratified medicine in JIA. The multiple stakeholders and partners support synergy across the UK and further afield to ensure that recording of response outcome data using standardised methods becomes part of routine clinical care to allow every case of JIA to contribute to the evidence base for a stratified approach to treatment, and encourage rapid patient benefit and facilitate the dispersion of new approaches/etc. found across their connecting communities. International Networks (PRINTO, Pharmachild, UCAN) : data sharing to allow inclusion of very large numbers of cases and to bring benefit to children beyond the UK Industrial partners - JanssenCilag will support establishing TranSMART platform for data integration. Pfizer will supply expertise in bioinformatics and pathway analysis. Roche will provide genotype data. Farr Institute - links to e-health research will allow us to explore use of long term outcome data and capture primary care data in the future BSPAR,CCAA - enable CHART to actively engage with patients and families affected by JIA, to utilise BSPAR-et study data and liaise with the clinical affairs committee SPARKS - provide ongoing research grant Utrecht, Prague, Queens University Belfast, Birmingham Children's hospital etc. - data sharing and recruitment BANNAR - expertise on extending cohorts to Adolescent age range Representatives from all stakeholders will also be involved in the CHART Steering Committee which will meet approx twice a year. |
| Impact | Initial work has been completed : CHART Consortium established; Consortium Management group set up Clinical data, lab SOP and sample harmonization across 4 large cohort JIA UK studies (BSPAR-et, BCRD, CHARMS and CAPS.) has been achieved This collaboration involves input from charities, international networks, partners in industry, patient and public involvement; as well as academic collaborators across data management, paediatric, arthritis, genetics and genomic disciplines. |
| Start Year | 2014 |
| Description | Childhood Arthritis Response to Treatment Consortium (CHART): partnership to define stratified medicine tools for childhood inflammatory arthritis |
| Organisation | Queen's University Belfast |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Our research team at UCL are leading the large consortium ( CHART) for which we have been granted MRC funding. We have set up the collaborations and Consortium as above, as set out in the grant proposal The UCL team works closely with all the co-PIs and the database manager and is responsible for overall project planning - lead in organising Consortium meetings, keeping all stakeholders informed of workstreams and progress, ensure visability of CHART to public etc, interact with all stakeholders and support recruitment of new centres and cases to the consortium. The UCL team lead the Consortium, its, strategy , experimental plans, grant management, reports to funders, data management, consortium partnerships and dissemination, as well as consortium agreements, and MTAs. |
| Collaborator Contribution | Both Manchester and Liverpool colleagues are co -investigators in the new consortium. The Consortium has brought together the 4 large JIA cohort studies in the UK representing around 4000 cases of JIA , to enable studies of stratified medicine in JIA. The multiple stakeholders and partners support synergy across the UK and further afield to ensure that recording of response outcome data using standardised methods becomes part of routine clinical care to allow every case of JIA to contribute to the evidence base for a stratified approach to treatment, and encourage rapid patient benefit and facilitate the dispersion of new approaches/etc. found across their connecting communities. International Networks (PRINTO, Pharmachild, UCAN) : data sharing to allow inclusion of very large numbers of cases and to bring benefit to children beyond the UK Industrial partners - JanssenCilag will support establishing TranSMART platform for data integration. Pfizer will supply expertise in bioinformatics and pathway analysis. Roche will provide genotype data. Farr Institute - links to e-health research will allow us to explore use of long term outcome data and capture primary care data in the future BSPAR,CCAA - enable CHART to actively engage with patients and families affected by JIA, to utilise BSPAR-et study data and liaise with the clinical affairs committee SPARKS - provide ongoing research grant Utrecht, Prague, Queens University Belfast, Birmingham Children's hospital etc. - data sharing and recruitment BANNAR - expertise on extending cohorts to Adolescent age range Representatives from all stakeholders will also be involved in the CHART Steering Committee which will meet approx twice a year. |
| Impact | Initial work has been completed : CHART Consortium established; Consortium Management group set up Clinical data, lab SOP and sample harmonization across 4 large cohort JIA UK studies (BSPAR-et, BCRD, CHARMS and CAPS.) has been achieved This collaboration involves input from charities, international networks, partners in industry, patient and public involvement; as well as academic collaborators across data management, paediatric, arthritis, genetics and genomic disciplines. |
| Start Year | 2014 |
| Description | Childhood Arthritis Response to Treatment Consortium (CHART): partnership to define stratified medicine tools for childhood inflammatory arthritis |
| Organisation | Roche Pharmaceuticals |
| Country | Global |
| Sector | Private |
| PI Contribution | Our research team at UCL are leading the large consortium ( CHART) for which we have been granted MRC funding. We have set up the collaborations and Consortium as above, as set out in the grant proposal The UCL team works closely with all the co-PIs and the database manager and is responsible for overall project planning - lead in organising Consortium meetings, keeping all stakeholders informed of workstreams and progress, ensure visability of CHART to public etc, interact with all stakeholders and support recruitment of new centres and cases to the consortium. The UCL team lead the Consortium, its, strategy , experimental plans, grant management, reports to funders, data management, consortium partnerships and dissemination, as well as consortium agreements, and MTAs. |
| Collaborator Contribution | Both Manchester and Liverpool colleagues are co -investigators in the new consortium. The Consortium has brought together the 4 large JIA cohort studies in the UK representing around 4000 cases of JIA , to enable studies of stratified medicine in JIA. The multiple stakeholders and partners support synergy across the UK and further afield to ensure that recording of response outcome data using standardised methods becomes part of routine clinical care to allow every case of JIA to contribute to the evidence base for a stratified approach to treatment, and encourage rapid patient benefit and facilitate the dispersion of new approaches/etc. found across their connecting communities. International Networks (PRINTO, Pharmachild, UCAN) : data sharing to allow inclusion of very large numbers of cases and to bring benefit to children beyond the UK Industrial partners - JanssenCilag will support establishing TranSMART platform for data integration. Pfizer will supply expertise in bioinformatics and pathway analysis. Roche will provide genotype data. Farr Institute - links to e-health research will allow us to explore use of long term outcome data and capture primary care data in the future BSPAR,CCAA - enable CHART to actively engage with patients and families affected by JIA, to utilise BSPAR-et study data and liaise with the clinical affairs committee SPARKS - provide ongoing research grant Utrecht, Prague, Queens University Belfast, Birmingham Children's hospital etc. - data sharing and recruitment BANNAR - expertise on extending cohorts to Adolescent age range Representatives from all stakeholders will also be involved in the CHART Steering Committee which will meet approx twice a year. |
| Impact | Initial work has been completed : CHART Consortium established; Consortium Management group set up Clinical data, lab SOP and sample harmonization across 4 large cohort JIA UK studies (BSPAR-et, BCRD, CHARMS and CAPS.) has been achieved This collaboration involves input from charities, international networks, partners in industry, patient and public involvement; as well as academic collaborators across data management, paediatric, arthritis, genetics and genomic disciplines. |
| Start Year | 2014 |
| Description | Childhood Arthritis Response to Treatment Consortium (CHART): partnership to define stratified medicine tools for childhood inflammatory arthritis |
| Organisation | Sparks Charity |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Our research team at UCL are leading the large consortium ( CHART) for which we have been granted MRC funding. We have set up the collaborations and Consortium as above, as set out in the grant proposal The UCL team works closely with all the co-PIs and the database manager and is responsible for overall project planning - lead in organising Consortium meetings, keeping all stakeholders informed of workstreams and progress, ensure visability of CHART to public etc, interact with all stakeholders and support recruitment of new centres and cases to the consortium. The UCL team lead the Consortium, its, strategy , experimental plans, grant management, reports to funders, data management, consortium partnerships and dissemination, as well as consortium agreements, and MTAs. |
| Collaborator Contribution | Both Manchester and Liverpool colleagues are co -investigators in the new consortium. The Consortium has brought together the 4 large JIA cohort studies in the UK representing around 4000 cases of JIA , to enable studies of stratified medicine in JIA. The multiple stakeholders and partners support synergy across the UK and further afield to ensure that recording of response outcome data using standardised methods becomes part of routine clinical care to allow every case of JIA to contribute to the evidence base for a stratified approach to treatment, and encourage rapid patient benefit and facilitate the dispersion of new approaches/etc. found across their connecting communities. International Networks (PRINTO, Pharmachild, UCAN) : data sharing to allow inclusion of very large numbers of cases and to bring benefit to children beyond the UK Industrial partners - JanssenCilag will support establishing TranSMART platform for data integration. Pfizer will supply expertise in bioinformatics and pathway analysis. Roche will provide genotype data. Farr Institute - links to e-health research will allow us to explore use of long term outcome data and capture primary care data in the future BSPAR,CCAA - enable CHART to actively engage with patients and families affected by JIA, to utilise BSPAR-et study data and liaise with the clinical affairs committee SPARKS - provide ongoing research grant Utrecht, Prague, Queens University Belfast, Birmingham Children's hospital etc. - data sharing and recruitment BANNAR - expertise on extending cohorts to Adolescent age range Representatives from all stakeholders will also be involved in the CHART Steering Committee which will meet approx twice a year. |
| Impact | Initial work has been completed : CHART Consortium established; Consortium Management group set up Clinical data, lab SOP and sample harmonization across 4 large cohort JIA UK studies (BSPAR-et, BCRD, CHARMS and CAPS.) has been achieved This collaboration involves input from charities, international networks, partners in industry, patient and public involvement; as well as academic collaborators across data management, paediatric, arthritis, genetics and genomic disciplines. |
| Start Year | 2014 |
| Description | Childhood Arthritis Response to Treatment Consortium (CHART): partnership to define stratified medicine tools for childhood inflammatory arthritis |
| Organisation | UCAN (Understanding Childhood Arthritis Network) |
| Country | Canada |
| Sector | Charity/Non Profit |
| PI Contribution | Our research team at UCL are leading the large consortium ( CHART) for which we have been granted MRC funding. We have set up the collaborations and Consortium as above, as set out in the grant proposal The UCL team works closely with all the co-PIs and the database manager and is responsible for overall project planning - lead in organising Consortium meetings, keeping all stakeholders informed of workstreams and progress, ensure visability of CHART to public etc, interact with all stakeholders and support recruitment of new centres and cases to the consortium. The UCL team lead the Consortium, its, strategy , experimental plans, grant management, reports to funders, data management, consortium partnerships and dissemination, as well as consortium agreements, and MTAs. |
| Collaborator Contribution | Both Manchester and Liverpool colleagues are co -investigators in the new consortium. The Consortium has brought together the 4 large JIA cohort studies in the UK representing around 4000 cases of JIA , to enable studies of stratified medicine in JIA. The multiple stakeholders and partners support synergy across the UK and further afield to ensure that recording of response outcome data using standardised methods becomes part of routine clinical care to allow every case of JIA to contribute to the evidence base for a stratified approach to treatment, and encourage rapid patient benefit and facilitate the dispersion of new approaches/etc. found across their connecting communities. International Networks (PRINTO, Pharmachild, UCAN) : data sharing to allow inclusion of very large numbers of cases and to bring benefit to children beyond the UK Industrial partners - JanssenCilag will support establishing TranSMART platform for data integration. Pfizer will supply expertise in bioinformatics and pathway analysis. Roche will provide genotype data. Farr Institute - links to e-health research will allow us to explore use of long term outcome data and capture primary care data in the future BSPAR,CCAA - enable CHART to actively engage with patients and families affected by JIA, to utilise BSPAR-et study data and liaise with the clinical affairs committee SPARKS - provide ongoing research grant Utrecht, Prague, Queens University Belfast, Birmingham Children's hospital etc. - data sharing and recruitment BANNAR - expertise on extending cohorts to Adolescent age range Representatives from all stakeholders will also be involved in the CHART Steering Committee which will meet approx twice a year. |
| Impact | Initial work has been completed : CHART Consortium established; Consortium Management group set up Clinical data, lab SOP and sample harmonization across 4 large cohort JIA UK studies (BSPAR-et, BCRD, CHARMS and CAPS.) has been achieved This collaboration involves input from charities, international networks, partners in industry, patient and public involvement; as well as academic collaborators across data management, paediatric, arthritis, genetics and genomic disciplines. |
| Start Year | 2014 |
| Description | Childhood Arthritis Response to Treatment Consortium (CHART): partnership to define stratified medicine tools for childhood inflammatory arthritis |
| Organisation | University Hospital of Münster |
| Country | Germany |
| Sector | Hospitals |
| PI Contribution | Our research team at UCL are leading the large consortium ( CHART) for which we have been granted MRC funding. We have set up the collaborations and Consortium as above, as set out in the grant proposal The UCL team works closely with all the co-PIs and the database manager and is responsible for overall project planning - lead in organising Consortium meetings, keeping all stakeholders informed of workstreams and progress, ensure visability of CHART to public etc, interact with all stakeholders and support recruitment of new centres and cases to the consortium. The UCL team lead the Consortium, its, strategy , experimental plans, grant management, reports to funders, data management, consortium partnerships and dissemination, as well as consortium agreements, and MTAs. |
| Collaborator Contribution | Both Manchester and Liverpool colleagues are co -investigators in the new consortium. The Consortium has brought together the 4 large JIA cohort studies in the UK representing around 4000 cases of JIA , to enable studies of stratified medicine in JIA. The multiple stakeholders and partners support synergy across the UK and further afield to ensure that recording of response outcome data using standardised methods becomes part of routine clinical care to allow every case of JIA to contribute to the evidence base for a stratified approach to treatment, and encourage rapid patient benefit and facilitate the dispersion of new approaches/etc. found across their connecting communities. International Networks (PRINTO, Pharmachild, UCAN) : data sharing to allow inclusion of very large numbers of cases and to bring benefit to children beyond the UK Industrial partners - JanssenCilag will support establishing TranSMART platform for data integration. Pfizer will supply expertise in bioinformatics and pathway analysis. Roche will provide genotype data. Farr Institute - links to e-health research will allow us to explore use of long term outcome data and capture primary care data in the future BSPAR,CCAA - enable CHART to actively engage with patients and families affected by JIA, to utilise BSPAR-et study data and liaise with the clinical affairs committee SPARKS - provide ongoing research grant Utrecht, Prague, Queens University Belfast, Birmingham Children's hospital etc. - data sharing and recruitment BANNAR - expertise on extending cohorts to Adolescent age range Representatives from all stakeholders will also be involved in the CHART Steering Committee which will meet approx twice a year. |
| Impact | Initial work has been completed : CHART Consortium established; Consortium Management group set up Clinical data, lab SOP and sample harmonization across 4 large cohort JIA UK studies (BSPAR-et, BCRD, CHARMS and CAPS.) has been achieved This collaboration involves input from charities, international networks, partners in industry, patient and public involvement; as well as academic collaborators across data management, paediatric, arthritis, genetics and genomic disciplines. |
| Start Year | 2014 |
| Description | Childhood Arthritis Response to Treatment Consortium (CHART): partnership to define stratified medicine tools for childhood inflammatory arthritis |
| Organisation | University of Liverpool |
| Department | Department of Women's and Children's Health |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Our research team at UCL are leading the large consortium ( CHART) for which we have been granted MRC funding. We have set up the collaborations and Consortium as above, as set out in the grant proposal The UCL team works closely with all the co-PIs and the database manager and is responsible for overall project planning - lead in organising Consortium meetings, keeping all stakeholders informed of workstreams and progress, ensure visability of CHART to public etc, interact with all stakeholders and support recruitment of new centres and cases to the consortium. The UCL team lead the Consortium, its, strategy , experimental plans, grant management, reports to funders, data management, consortium partnerships and dissemination, as well as consortium agreements, and MTAs. |
| Collaborator Contribution | Both Manchester and Liverpool colleagues are co -investigators in the new consortium. The Consortium has brought together the 4 large JIA cohort studies in the UK representing around 4000 cases of JIA , to enable studies of stratified medicine in JIA. The multiple stakeholders and partners support synergy across the UK and further afield to ensure that recording of response outcome data using standardised methods becomes part of routine clinical care to allow every case of JIA to contribute to the evidence base for a stratified approach to treatment, and encourage rapid patient benefit and facilitate the dispersion of new approaches/etc. found across their connecting communities. International Networks (PRINTO, Pharmachild, UCAN) : data sharing to allow inclusion of very large numbers of cases and to bring benefit to children beyond the UK Industrial partners - JanssenCilag will support establishing TranSMART platform for data integration. Pfizer will supply expertise in bioinformatics and pathway analysis. Roche will provide genotype data. Farr Institute - links to e-health research will allow us to explore use of long term outcome data and capture primary care data in the future BSPAR,CCAA - enable CHART to actively engage with patients and families affected by JIA, to utilise BSPAR-et study data and liaise with the clinical affairs committee SPARKS - provide ongoing research grant Utrecht, Prague, Queens University Belfast, Birmingham Children's hospital etc. - data sharing and recruitment BANNAR - expertise on extending cohorts to Adolescent age range Representatives from all stakeholders will also be involved in the CHART Steering Committee which will meet approx twice a year. |
| Impact | Initial work has been completed : CHART Consortium established; Consortium Management group set up Clinical data, lab SOP and sample harmonization across 4 large cohort JIA UK studies (BSPAR-et, BCRD, CHARMS and CAPS.) has been achieved This collaboration involves input from charities, international networks, partners in industry, patient and public involvement; as well as academic collaborators across data management, paediatric, arthritis, genetics and genomic disciplines. |
| Start Year | 2014 |
| Description | Childhood Arthritis Response to Treatment Consortium (CHART): partnership to define stratified medicine tools for childhood inflammatory arthritis |
| Organisation | University of Manchester |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Our research team at UCL are leading the large consortium ( CHART) for which we have been granted MRC funding. We have set up the collaborations and Consortium as above, as set out in the grant proposal The UCL team works closely with all the co-PIs and the database manager and is responsible for overall project planning - lead in organising Consortium meetings, keeping all stakeholders informed of workstreams and progress, ensure visability of CHART to public etc, interact with all stakeholders and support recruitment of new centres and cases to the consortium. The UCL team lead the Consortium, its, strategy , experimental plans, grant management, reports to funders, data management, consortium partnerships and dissemination, as well as consortium agreements, and MTAs. |
| Collaborator Contribution | Both Manchester and Liverpool colleagues are co -investigators in the new consortium. The Consortium has brought together the 4 large JIA cohort studies in the UK representing around 4000 cases of JIA , to enable studies of stratified medicine in JIA. The multiple stakeholders and partners support synergy across the UK and further afield to ensure that recording of response outcome data using standardised methods becomes part of routine clinical care to allow every case of JIA to contribute to the evidence base for a stratified approach to treatment, and encourage rapid patient benefit and facilitate the dispersion of new approaches/etc. found across their connecting communities. International Networks (PRINTO, Pharmachild, UCAN) : data sharing to allow inclusion of very large numbers of cases and to bring benefit to children beyond the UK Industrial partners - JanssenCilag will support establishing TranSMART platform for data integration. Pfizer will supply expertise in bioinformatics and pathway analysis. Roche will provide genotype data. Farr Institute - links to e-health research will allow us to explore use of long term outcome data and capture primary care data in the future BSPAR,CCAA - enable CHART to actively engage with patients and families affected by JIA, to utilise BSPAR-et study data and liaise with the clinical affairs committee SPARKS - provide ongoing research grant Utrecht, Prague, Queens University Belfast, Birmingham Children's hospital etc. - data sharing and recruitment BANNAR - expertise on extending cohorts to Adolescent age range Representatives from all stakeholders will also be involved in the CHART Steering Committee which will meet approx twice a year. |
| Impact | Initial work has been completed : CHART Consortium established; Consortium Management group set up Clinical data, lab SOP and sample harmonization across 4 large cohort JIA UK studies (BSPAR-et, BCRD, CHARMS and CAPS.) has been achieved This collaboration involves input from charities, international networks, partners in industry, patient and public involvement; as well as academic collaborators across data management, paediatric, arthritis, genetics and genomic disciplines. |
| Start Year | 2014 |
| Description | Childhood Arthritis Response to Treatment Consortium (CHART): partnership to define stratified medicine tools for childhood inflammatory arthritis |
| Organisation | Utrecht University |
| Country | Netherlands |
| Sector | Academic/University |
| PI Contribution | Our research team at UCL are leading the large consortium ( CHART) for which we have been granted MRC funding. We have set up the collaborations and Consortium as above, as set out in the grant proposal The UCL team works closely with all the co-PIs and the database manager and is responsible for overall project planning - lead in organising Consortium meetings, keeping all stakeholders informed of workstreams and progress, ensure visability of CHART to public etc, interact with all stakeholders and support recruitment of new centres and cases to the consortium. The UCL team lead the Consortium, its, strategy , experimental plans, grant management, reports to funders, data management, consortium partnerships and dissemination, as well as consortium agreements, and MTAs. |
| Collaborator Contribution | Both Manchester and Liverpool colleagues are co -investigators in the new consortium. The Consortium has brought together the 4 large JIA cohort studies in the UK representing around 4000 cases of JIA , to enable studies of stratified medicine in JIA. The multiple stakeholders and partners support synergy across the UK and further afield to ensure that recording of response outcome data using standardised methods becomes part of routine clinical care to allow every case of JIA to contribute to the evidence base for a stratified approach to treatment, and encourage rapid patient benefit and facilitate the dispersion of new approaches/etc. found across their connecting communities. International Networks (PRINTO, Pharmachild, UCAN) : data sharing to allow inclusion of very large numbers of cases and to bring benefit to children beyond the UK Industrial partners - JanssenCilag will support establishing TranSMART platform for data integration. Pfizer will supply expertise in bioinformatics and pathway analysis. Roche will provide genotype data. Farr Institute - links to e-health research will allow us to explore use of long term outcome data and capture primary care data in the future BSPAR,CCAA - enable CHART to actively engage with patients and families affected by JIA, to utilise BSPAR-et study data and liaise with the clinical affairs committee SPARKS - provide ongoing research grant Utrecht, Prague, Queens University Belfast, Birmingham Children's hospital etc. - data sharing and recruitment BANNAR - expertise on extending cohorts to Adolescent age range Representatives from all stakeholders will also be involved in the CHART Steering Committee which will meet approx twice a year. |
| Impact | Initial work has been completed : CHART Consortium established; Consortium Management group set up Clinical data, lab SOP and sample harmonization across 4 large cohort JIA UK studies (BSPAR-et, BCRD, CHARMS and CAPS.) has been achieved This collaboration involves input from charities, international networks, partners in industry, patient and public involvement; as well as academic collaborators across data management, paediatric, arthritis, genetics and genomic disciplines. |
| Start Year | 2014 |
| Description | Childhood Arthritis Response to Treatment Consortium (CHART): partnership to define stratified medicine tools for childhood inflammatory arthritis |
| Organisation | Versus Arthritis |
| Department | Maximising Therapeutic Utility for Rheumatoid Arthritis |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Our research team at UCL are leading the large consortium ( CHART) for which we have been granted MRC funding. We have set up the collaborations and Consortium as above, as set out in the grant proposal The UCL team works closely with all the co-PIs and the database manager and is responsible for overall project planning - lead in organising Consortium meetings, keeping all stakeholders informed of workstreams and progress, ensure visability of CHART to public etc, interact with all stakeholders and support recruitment of new centres and cases to the consortium. The UCL team lead the Consortium, its, strategy , experimental plans, grant management, reports to funders, data management, consortium partnerships and dissemination, as well as consortium agreements, and MTAs. |
| Collaborator Contribution | Both Manchester and Liverpool colleagues are co -investigators in the new consortium. The Consortium has brought together the 4 large JIA cohort studies in the UK representing around 4000 cases of JIA , to enable studies of stratified medicine in JIA. The multiple stakeholders and partners support synergy across the UK and further afield to ensure that recording of response outcome data using standardised methods becomes part of routine clinical care to allow every case of JIA to contribute to the evidence base for a stratified approach to treatment, and encourage rapid patient benefit and facilitate the dispersion of new approaches/etc. found across their connecting communities. International Networks (PRINTO, Pharmachild, UCAN) : data sharing to allow inclusion of very large numbers of cases and to bring benefit to children beyond the UK Industrial partners - JanssenCilag will support establishing TranSMART platform for data integration. Pfizer will supply expertise in bioinformatics and pathway analysis. Roche will provide genotype data. Farr Institute - links to e-health research will allow us to explore use of long term outcome data and capture primary care data in the future BSPAR,CCAA - enable CHART to actively engage with patients and families affected by JIA, to utilise BSPAR-et study data and liaise with the clinical affairs committee SPARKS - provide ongoing research grant Utrecht, Prague, Queens University Belfast, Birmingham Children's hospital etc. - data sharing and recruitment BANNAR - expertise on extending cohorts to Adolescent age range Representatives from all stakeholders will also be involved in the CHART Steering Committee which will meet approx twice a year. |
| Impact | Initial work has been completed : CHART Consortium established; Consortium Management group set up Clinical data, lab SOP and sample harmonization across 4 large cohort JIA UK studies (BSPAR-et, BCRD, CHARMS and CAPS.) has been achieved This collaboration involves input from charities, international networks, partners in industry, patient and public involvement; as well as academic collaborators across data management, paediatric, arthritis, genetics and genomic disciplines. |
| Start Year | 2014 |
| Description | Defining the cellular basis of joint and gut inflammation. |
| Organisation | University of Birmingham |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | "Birmingham University. Award Funder: Kennedy Trust (ATAP)" Co-Investigator (Lucy Wedderburn) |
| Collaborator Contribution | Co-Investigator (Lucy Wedderburn) |
| Impact | None |
| Start Year | 2020 |
| Description | FOREUM - Comorbidity in JIA |
| Organisation | Leibniz Association |
| Department | German Rheumatism Research Centre |
| Country | Germany |
| Sector | Charity/Non Profit |
| PI Contribution | part of a 3 centre collaboration for statistical analyses of data captured in this award and a related award. The award is starting this month. |
| Collaborator Contribution | Not yet started |
| Impact | Not yet started |
| Start Year | 2017 |
| Description | FOREUM - Comorbidity in JIA |
| Organisation | University of Genoa |
| Country | Italy |
| Sector | Academic/University |
| PI Contribution | part of a 3 centre collaboration for statistical analyses of data captured in this award and a related award. The award is starting this month. |
| Collaborator Contribution | Not yet started |
| Impact | Not yet started |
| Start Year | 2017 |
| Description | FOREUM - Comorbidity in JIA |
| Organisation | Utrecht University |
| Country | Netherlands |
| Sector | Academic/University |
| PI Contribution | part of a 3 centre collaboration for statistical analyses of data captured in this award and a related award. The award is starting this month. |
| Collaborator Contribution | Not yet started |
| Impact | Not yet started |
| Start Year | 2017 |
| Description | JIA Research Biospecimen Standardization Collaboration (updated for 2016/7) |
| Organisation | UCAN (Understanding Childhood Arthritis Network) |
| Country | Canada |
| Sector | Charity/Non Profit |
| PI Contribution | Discussions, meetings and drafts of standardized laboratory SOPs for the collection and processing of bio-specimens attached to research studies - e.g. DNA, Plasma, Serum, PBMC. This work was led by members of the CHARMS and CHART teams, UCL , UK All SOPs and methods then compared and in some cases directly tested (see secondment, UCAN U to London 2015) . |
| Collaborator Contribution | Provide feedback and input and insight into shaping the final SOP documents, and alignment catalogue. Materials used to prepare for International meeting 2016 |
| Impact | 2015/6 Submission: Standardized SOPs for : serum , plasma, DNA and PBMC for JIA studies. To present at international stakeholder meeting in March 2016 for ratification. For 2016/7 submission: Bio specimen collection protocols that were compared between London, Manchester, Utrecht and Toronto were openly shared at the Towards Stratified Medicine in JIA meeting in March 2016. These will be available on the UCAN-U website and going forward we are now using the ISBER (International Society for biological and environmental repositories) coding system with the goal to have all bio specimen protocols coded in this way. International catalogue is in progress, having been discussed at the PRES 2016 meeting for possible hosting solutions. |
| Start Year | 2014 |
| Description | JIA Research Biospecimen Standardization Collaboration (updated for 2016/7) |
| Organisation | UCAN (Understanding Childhood Arthritis Network) |
| Country | Canada |
| Sector | Charity/Non Profit |
| PI Contribution | Discussions, meetings and drafts of standardized laboratory SOPs for the collection and processing of bio-specimens attached to research studies - e.g. DNA, Plasma, Serum, PBMC. This work was led by members of the CHARMS and CHART teams, UCL , UK All SOPs and methods then compared and in some cases directly tested (see secondment, UCAN U to London 2015) . |
| Collaborator Contribution | Provide feedback and input and insight into shaping the final SOP documents, and alignment catalogue. Materials used to prepare for International meeting 2016 |
| Impact | 2015/6 Submission: Standardized SOPs for : serum , plasma, DNA and PBMC for JIA studies. To present at international stakeholder meeting in March 2016 for ratification. For 2016/7 submission: Bio specimen collection protocols that were compared between London, Manchester, Utrecht and Toronto were openly shared at the Towards Stratified Medicine in JIA meeting in March 2016. These will be available on the UCAN-U website and going forward we are now using the ISBER (International Society for biological and environmental repositories) coding system with the goal to have all bio specimen protocols coded in this way. International catalogue is in progress, having been discussed at the PRES 2016 meeting for possible hosting solutions. |
| Start Year | 2014 |
| Description | JIA Research Biospecimen Standardization Collaboration (updated for 2016/7) |
| Organisation | University College London |
| Department | Institute of Child Health |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Discussions, meetings and drafts of standardized laboratory SOPs for the collection and processing of bio-specimens attached to research studies - e.g. DNA, Plasma, Serum, PBMC. This work was led by members of the CHARMS and CHART teams, UCL , UK All SOPs and methods then compared and in some cases directly tested (see secondment, UCAN U to London 2015) . |
| Collaborator Contribution | Provide feedback and input and insight into shaping the final SOP documents, and alignment catalogue. Materials used to prepare for International meeting 2016 |
| Impact | 2015/6 Submission: Standardized SOPs for : serum , plasma, DNA and PBMC for JIA studies. To present at international stakeholder meeting in March 2016 for ratification. For 2016/7 submission: Bio specimen collection protocols that were compared between London, Manchester, Utrecht and Toronto were openly shared at the Towards Stratified Medicine in JIA meeting in March 2016. These will be available on the UCAN-U website and going forward we are now using the ISBER (International Society for biological and environmental repositories) coding system with the goal to have all bio specimen protocols coded in this way. International catalogue is in progress, having been discussed at the PRES 2016 meeting for possible hosting solutions. |
| Start Year | 2014 |
| Description | JIA Research Biospecimen Standardization Collaboration (updated for 2016/7) |
| Organisation | University Medical Center Utrecht (UMC) |
| Country | Netherlands |
| Sector | Academic/University |
| PI Contribution | Discussions, meetings and drafts of standardized laboratory SOPs for the collection and processing of bio-specimens attached to research studies - e.g. DNA, Plasma, Serum, PBMC. This work was led by members of the CHARMS and CHART teams, UCL , UK All SOPs and methods then compared and in some cases directly tested (see secondment, UCAN U to London 2015) . |
| Collaborator Contribution | Provide feedback and input and insight into shaping the final SOP documents, and alignment catalogue. Materials used to prepare for International meeting 2016 |
| Impact | 2015/6 Submission: Standardized SOPs for : serum , plasma, DNA and PBMC for JIA studies. To present at international stakeholder meeting in March 2016 for ratification. For 2016/7 submission: Bio specimen collection protocols that were compared between London, Manchester, Utrecht and Toronto were openly shared at the Towards Stratified Medicine in JIA meeting in March 2016. These will be available on the UCAN-U website and going forward we are now using the ISBER (International Society for biological and environmental repositories) coding system with the goal to have all bio specimen protocols coded in this way. International catalogue is in progress, having been discussed at the PRES 2016 meeting for possible hosting solutions. |
| Start Year | 2014 |
| Description | JIA Research Biospecimen Standardization Collaboration (updated for 2016/7) |
| Organisation | University of Manchester |
| Department | Centre for Genomic Medicine |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Discussions, meetings and drafts of standardized laboratory SOPs for the collection and processing of bio-specimens attached to research studies - e.g. DNA, Plasma, Serum, PBMC. This work was led by members of the CHARMS and CHART teams, UCL , UK All SOPs and methods then compared and in some cases directly tested (see secondment, UCAN U to London 2015) . |
| Collaborator Contribution | Provide feedback and input and insight into shaping the final SOP documents, and alignment catalogue. Materials used to prepare for International meeting 2016 |
| Impact | 2015/6 Submission: Standardized SOPs for : serum , plasma, DNA and PBMC for JIA studies. To present at international stakeholder meeting in March 2016 for ratification. For 2016/7 submission: Bio specimen collection protocols that were compared between London, Manchester, Utrecht and Toronto were openly shared at the Towards Stratified Medicine in JIA meeting in March 2016. These will be available on the UCAN-U website and going forward we are now using the ISBER (International Society for biological and environmental repositories) coding system with the goal to have all bio specimen protocols coded in this way. International catalogue is in progress, having been discussed at the PRES 2016 meeting for possible hosting solutions. |
| Start Year | 2014 |
| Description | JIA Research Biospecimen Standardization Collaboration (updated for 2016/7) |
| Organisation | University of Toronto |
| Country | Canada |
| Sector | Academic/University |
| PI Contribution | Discussions, meetings and drafts of standardized laboratory SOPs for the collection and processing of bio-specimens attached to research studies - e.g. DNA, Plasma, Serum, PBMC. This work was led by members of the CHARMS and CHART teams, UCL , UK All SOPs and methods then compared and in some cases directly tested (see secondment, UCAN U to London 2015) . |
| Collaborator Contribution | Provide feedback and input and insight into shaping the final SOP documents, and alignment catalogue. Materials used to prepare for International meeting 2016 |
| Impact | 2015/6 Submission: Standardized SOPs for : serum , plasma, DNA and PBMC for JIA studies. To present at international stakeholder meeting in March 2016 for ratification. For 2016/7 submission: Bio specimen collection protocols that were compared between London, Manchester, Utrecht and Toronto were openly shared at the Towards Stratified Medicine in JIA meeting in March 2016. These will be available on the UCAN-U website and going forward we are now using the ISBER (International Society for biological and environmental repositories) coding system with the goal to have all bio specimen protocols coded in this way. International catalogue is in progress, having been discussed at the PRES 2016 meeting for possible hosting solutions. |
| Start Year | 2014 |
| Description | London Declaration of Principles of Research Collaboration for Stratified Medicine in Childhood Rheumatic Disorders (2016) |
| Organisation | Cincinnati Children's Hospital Medical Center |
| Country | United States |
| Sector | Hospitals |
| PI Contribution | This was an output from the CHART co-hosted Towards Stratified Medicine in JIA International meeting (see entry above). This low key collaboration was signed by all at the meeting, including the four CHART Co-I's, but was designed to form the basis of a framework that aims to support individuals, research group and organizations in completing collaborative research in childhood rheumatic disorders internationally. Work on a toolkit as part of this collaboration is ongoing |
| Collaborator Contribution | In becoming signatories of this declaration all parties indicated their commitment to the principles and to aim to work openly and collaboratively across international JIA research, and to consider how combined resource might be optimized regarding key research questions in JIA stratified medicine. |
| Impact | Work on a toolkit as part of this collaboration is ongoing. The collaborations formed in this group have also assisted CHART by identifying further potential collaborations that will enrich the CHART cohorts particularly in the CLUSTER bid (outlined above.) |
| Start Year | 2016 |
| Description | London Declaration of Principles of Research Collaboration for Stratified Medicine in Childhood Rheumatic Disorders (2016) |
| Organisation | Duke University |
| Department | Division of Rheumatology and Immunology |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | This was an output from the CHART co-hosted Towards Stratified Medicine in JIA International meeting (see entry above). This low key collaboration was signed by all at the meeting, including the four CHART Co-I's, but was designed to form the basis of a framework that aims to support individuals, research group and organizations in completing collaborative research in childhood rheumatic disorders internationally. Work on a toolkit as part of this collaboration is ongoing |
| Collaborator Contribution | In becoming signatories of this declaration all parties indicated their commitment to the principles and to aim to work openly and collaboratively across international JIA research, and to consider how combined resource might be optimized regarding key research questions in JIA stratified medicine. |
| Impact | Work on a toolkit as part of this collaboration is ongoing. The collaborations formed in this group have also assisted CHART by identifying further potential collaborations that will enrich the CHART cohorts particularly in the CLUSTER bid (outlined above.) |
| Start Year | 2016 |
| Description | London Declaration of Principles of Research Collaboration for Stratified Medicine in Childhood Rheumatic Disorders (2016) |
| Organisation | European Medicines Agency |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | This was an output from the CHART co-hosted Towards Stratified Medicine in JIA International meeting (see entry above). This low key collaboration was signed by all at the meeting, including the four CHART Co-I's, but was designed to form the basis of a framework that aims to support individuals, research group and organizations in completing collaborative research in childhood rheumatic disorders internationally. Work on a toolkit as part of this collaboration is ongoing |
| Collaborator Contribution | In becoming signatories of this declaration all parties indicated their commitment to the principles and to aim to work openly and collaboratively across international JIA research, and to consider how combined resource might be optimized regarding key research questions in JIA stratified medicine. |
| Impact | Work on a toolkit as part of this collaboration is ongoing. The collaborations formed in this group have also assisted CHART by identifying further potential collaborations that will enrich the CHART cohorts particularly in the CLUSTER bid (outlined above.) |
| Start Year | 2016 |
| Description | London Declaration of Principles of Research Collaboration for Stratified Medicine in Childhood Rheumatic Disorders (2016) |
| Organisation | Harvard University |
| Department | Harvard Medical School |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | This was an output from the CHART co-hosted Towards Stratified Medicine in JIA International meeting (see entry above). This low key collaboration was signed by all at the meeting, including the four CHART Co-I's, but was designed to form the basis of a framework that aims to support individuals, research group and organizations in completing collaborative research in childhood rheumatic disorders internationally. Work on a toolkit as part of this collaboration is ongoing |
| Collaborator Contribution | In becoming signatories of this declaration all parties indicated their commitment to the principles and to aim to work openly and collaboratively across international JIA research, and to consider how combined resource might be optimized regarding key research questions in JIA stratified medicine. |
| Impact | Work on a toolkit as part of this collaboration is ongoing. The collaborations formed in this group have also assisted CHART by identifying further potential collaborations that will enrich the CHART cohorts particularly in the CLUSTER bid (outlined above.) |
| Start Year | 2016 |
| Description | London Declaration of Principles of Research Collaboration for Stratified Medicine in Childhood Rheumatic Disorders (2016) |
| Organisation | Instituto Giannina Gaslini |
| Country | Italy |
| Sector | Hospitals |
| PI Contribution | This was an output from the CHART co-hosted Towards Stratified Medicine in JIA International meeting (see entry above). This low key collaboration was signed by all at the meeting, including the four CHART Co-I's, but was designed to form the basis of a framework that aims to support individuals, research group and organizations in completing collaborative research in childhood rheumatic disorders internationally. Work on a toolkit as part of this collaboration is ongoing |
| Collaborator Contribution | In becoming signatories of this declaration all parties indicated their commitment to the principles and to aim to work openly and collaboratively across international JIA research, and to consider how combined resource might be optimized regarding key research questions in JIA stratified medicine. |
| Impact | Work on a toolkit as part of this collaboration is ongoing. The collaborations formed in this group have also assisted CHART by identifying further potential collaborations that will enrich the CHART cohorts particularly in the CLUSTER bid (outlined above.) |
| Start Year | 2016 |
| Description | London Declaration of Principles of Research Collaboration for Stratified Medicine in Childhood Rheumatic Disorders (2016) |
| Organisation | Leibniz Association |
| Department | German Rheumatism Research Centre |
| Country | Germany |
| Sector | Charity/Non Profit |
| PI Contribution | This was an output from the CHART co-hosted Towards Stratified Medicine in JIA International meeting (see entry above). This low key collaboration was signed by all at the meeting, including the four CHART Co-I's, but was designed to form the basis of a framework that aims to support individuals, research group and organizations in completing collaborative research in childhood rheumatic disorders internationally. Work on a toolkit as part of this collaboration is ongoing |
| Collaborator Contribution | In becoming signatories of this declaration all parties indicated their commitment to the principles and to aim to work openly and collaboratively across international JIA research, and to consider how combined resource might be optimized regarding key research questions in JIA stratified medicine. |
| Impact | Work on a toolkit as part of this collaboration is ongoing. The collaborations formed in this group have also assisted CHART by identifying further potential collaborations that will enrich the CHART cohorts particularly in the CLUSTER bid (outlined above.) |
| Start Year | 2016 |
| Description | London Declaration of Principles of Research Collaboration for Stratified Medicine in Childhood Rheumatic Disorders (2016) |
| Organisation | Royal Children's Hospital Melbourne |
| Country | Australia |
| Sector | Hospitals |
| PI Contribution | This was an output from the CHART co-hosted Towards Stratified Medicine in JIA International meeting (see entry above). This low key collaboration was signed by all at the meeting, including the four CHART Co-I's, but was designed to form the basis of a framework that aims to support individuals, research group and organizations in completing collaborative research in childhood rheumatic disorders internationally. Work on a toolkit as part of this collaboration is ongoing |
| Collaborator Contribution | In becoming signatories of this declaration all parties indicated their commitment to the principles and to aim to work openly and collaboratively across international JIA research, and to consider how combined resource might be optimized regarding key research questions in JIA stratified medicine. |
| Impact | Work on a toolkit as part of this collaboration is ongoing. The collaborations formed in this group have also assisted CHART by identifying further potential collaborations that will enrich the CHART cohorts particularly in the CLUSTER bid (outlined above.) |
| Start Year | 2016 |
| Description | London Declaration of Principles of Research Collaboration for Stratified Medicine in Childhood Rheumatic Disorders (2016) |
| Organisation | Stanford University |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | This was an output from the CHART co-hosted Towards Stratified Medicine in JIA International meeting (see entry above). This low key collaboration was signed by all at the meeting, including the four CHART Co-I's, but was designed to form the basis of a framework that aims to support individuals, research group and organizations in completing collaborative research in childhood rheumatic disorders internationally. Work on a toolkit as part of this collaboration is ongoing |
| Collaborator Contribution | In becoming signatories of this declaration all parties indicated their commitment to the principles and to aim to work openly and collaboratively across international JIA research, and to consider how combined resource might be optimized regarding key research questions in JIA stratified medicine. |
| Impact | Work on a toolkit as part of this collaboration is ongoing. The collaborations formed in this group have also assisted CHART by identifying further potential collaborations that will enrich the CHART cohorts particularly in the CLUSTER bid (outlined above.) |
| Start Year | 2016 |
| Description | London Declaration of Principles of Research Collaboration for Stratified Medicine in Childhood Rheumatic Disorders (2016) |
| Organisation | UCAN (Understanding Childhood Arthritis Network) |
| Department | Ucan Utrecht |
| Country | Netherlands |
| Sector | Charity/Non Profit |
| PI Contribution | This was an output from the CHART co-hosted Towards Stratified Medicine in JIA International meeting (see entry above). This low key collaboration was signed by all at the meeting, including the four CHART Co-I's, but was designed to form the basis of a framework that aims to support individuals, research group and organizations in completing collaborative research in childhood rheumatic disorders internationally. Work on a toolkit as part of this collaboration is ongoing |
| Collaborator Contribution | In becoming signatories of this declaration all parties indicated their commitment to the principles and to aim to work openly and collaboratively across international JIA research, and to consider how combined resource might be optimized regarding key research questions in JIA stratified medicine. |
| Impact | Work on a toolkit as part of this collaboration is ongoing. The collaborations formed in this group have also assisted CHART by identifying further potential collaborations that will enrich the CHART cohorts particularly in the CLUSTER bid (outlined above.) |
| Start Year | 2016 |
| Description | London Declaration of Principles of Research Collaboration for Stratified Medicine in Childhood Rheumatic Disorders (2016) |
| Organisation | University Medical Center Utrecht (UMC) |
| Country | Netherlands |
| Sector | Academic/University |
| PI Contribution | This was an output from the CHART co-hosted Towards Stratified Medicine in JIA International meeting (see entry above). This low key collaboration was signed by all at the meeting, including the four CHART Co-I's, but was designed to form the basis of a framework that aims to support individuals, research group and organizations in completing collaborative research in childhood rheumatic disorders internationally. Work on a toolkit as part of this collaboration is ongoing |
| Collaborator Contribution | In becoming signatories of this declaration all parties indicated their commitment to the principles and to aim to work openly and collaboratively across international JIA research, and to consider how combined resource might be optimized regarding key research questions in JIA stratified medicine. |
| Impact | Work on a toolkit as part of this collaboration is ongoing. The collaborations formed in this group have also assisted CHART by identifying further potential collaborations that will enrich the CHART cohorts particularly in the CLUSTER bid (outlined above.) |
| Start Year | 2016 |
| Description | London Declaration of Principles of Research Collaboration for Stratified Medicine in Childhood Rheumatic Disorders (2016) |
| Organisation | University of Münster |
| Country | Germany |
| Sector | Academic/University |
| PI Contribution | This was an output from the CHART co-hosted Towards Stratified Medicine in JIA International meeting (see entry above). This low key collaboration was signed by all at the meeting, including the four CHART Co-I's, but was designed to form the basis of a framework that aims to support individuals, research group and organizations in completing collaborative research in childhood rheumatic disorders internationally. Work on a toolkit as part of this collaboration is ongoing |
| Collaborator Contribution | In becoming signatories of this declaration all parties indicated their commitment to the principles and to aim to work openly and collaboratively across international JIA research, and to consider how combined resource might be optimized regarding key research questions in JIA stratified medicine. |
| Impact | Work on a toolkit as part of this collaboration is ongoing. The collaborations formed in this group have also assisted CHART by identifying further potential collaborations that will enrich the CHART cohorts particularly in the CLUSTER bid (outlined above.) |
| Start Year | 2016 |
| Description | London Declaration of Principles of Research Collaboration for Stratified Medicine in Childhood Rheumatic Disorders (2016) |
| Organisation | University of Toronto |
| Department | Division of Rheumatology |
| Country | Canada |
| Sector | Hospitals |
| PI Contribution | This was an output from the CHART co-hosted Towards Stratified Medicine in JIA International meeting (see entry above). This low key collaboration was signed by all at the meeting, including the four CHART Co-I's, but was designed to form the basis of a framework that aims to support individuals, research group and organizations in completing collaborative research in childhood rheumatic disorders internationally. Work on a toolkit as part of this collaboration is ongoing |
| Collaborator Contribution | In becoming signatories of this declaration all parties indicated their commitment to the principles and to aim to work openly and collaboratively across international JIA research, and to consider how combined resource might be optimized regarding key research questions in JIA stratified medicine. |
| Impact | Work on a toolkit as part of this collaboration is ongoing. The collaborations formed in this group have also assisted CHART by identifying further potential collaborations that will enrich the CHART cohorts particularly in the CLUSTER bid (outlined above.) |
| Start Year | 2016 |
| Description | MAPJAG collaboration: Defining the cellular basis of joint and gut inflammation |
| Organisation | University of Birmingham |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Prof. Wedderburn - Significant time and input on study design, data set design and set up, and parent/patient involvement in both grant and ethics application. |
| Collaborator Contribution | Collaborators : Dr A Croft (University of Birmingham) , Prof A Filer (University of Birmingham), Prof H Uhlig and Dr Calliope Dendrou (University of Oxford) Significant time and input on study design , Data set design and set up, and parent/patient involvement in both grant and ethics application |
| Impact | Still in early stages of collaboration, so no outputs yet. |
| Start Year | 2020 |
| Description | MAPJAG collaboration: Defining the cellular basis of joint and gut inflammation |
| Organisation | University of Oxford |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Prof. Wedderburn - Significant time and input on study design, data set design and set up, and parent/patient involvement in both grant and ethics application. |
| Collaborator Contribution | Collaborators : Dr A Croft (University of Birmingham) , Prof A Filer (University of Birmingham), Prof H Uhlig and Dr Calliope Dendrou (University of Oxford) Significant time and input on study design , Data set design and set up, and parent/patient involvement in both grant and ethics application |
| Impact | Still in early stages of collaboration, so no outputs yet. |
| Start Year | 2020 |
| Description | MATURA - Genetics Partnership |
| Organisation | Queen Mary University of London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The CHARMS study has made key contributions to CHART consortium ( see CHART partnership) CHART has initiated this proposal for a meta analysis between adults and children using available parallel data sets (MATURA- adults with RA /CHART - children with JIA) of genome wide genotypes in patients with response data to MTX when used for inflammatory arthritis . To date CHART has established the group to work on this project and set up the initial discussions and regular TC for project planning. CHART will provide approximately 1600 cases ( JIA) where genotype and response to MTX data are available. |
| Collaborator Contribution | Prof Morgan is leading the genetic analysis of MTX response in RA and will provide approximately 1200 RA cases with genotype and response data . The Leeds team and Manchester teams will both provide statistical analysis expertise. |
| Impact | Update for 2016/7: CHART has successfully partnered with the MRC funded Stratified medicine consortium MATURA, (working on adult RA) to establish cross age comparison of data sets such as genetics of response, starting with genotype data shared on adults and children in relation to response to MTX (Prof Thomson JIA, Prof A Morgan Leeds, RA ) in collaboration with Roche . |
| Start Year | 2015 |
| Description | MATURA - Genetics Partnership |
| Organisation | University of Leeds |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The CHARMS study has made key contributions to CHART consortium ( see CHART partnership) CHART has initiated this proposal for a meta analysis between adults and children using available parallel data sets (MATURA- adults with RA /CHART - children with JIA) of genome wide genotypes in patients with response data to MTX when used for inflammatory arthritis . To date CHART has established the group to work on this project and set up the initial discussions and regular TC for project planning. CHART will provide approximately 1600 cases ( JIA) where genotype and response to MTX data are available. |
| Collaborator Contribution | Prof Morgan is leading the genetic analysis of MTX response in RA and will provide approximately 1200 RA cases with genotype and response data . The Leeds team and Manchester teams will both provide statistical analysis expertise. |
| Impact | Update for 2016/7: CHART has successfully partnered with the MRC funded Stratified medicine consortium MATURA, (working on adult RA) to establish cross age comparison of data sets such as genetics of response, starting with genotype data shared on adults and children in relation to response to MTX (Prof Thomson JIA, Prof A Morgan Leeds, RA ) in collaboration with Roche . |
| Start Year | 2015 |
| Description | MATURA - Genetics Partnership |
| Organisation | University of Manchester |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The CHARMS study has made key contributions to CHART consortium ( see CHART partnership) CHART has initiated this proposal for a meta analysis between adults and children using available parallel data sets (MATURA- adults with RA /CHART - children with JIA) of genome wide genotypes in patients with response data to MTX when used for inflammatory arthritis . To date CHART has established the group to work on this project and set up the initial discussions and regular TC for project planning. CHART will provide approximately 1600 cases ( JIA) where genotype and response to MTX data are available. |
| Collaborator Contribution | Prof Morgan is leading the genetic analysis of MTX response in RA and will provide approximately 1200 RA cases with genotype and response data . The Leeds team and Manchester teams will both provide statistical analysis expertise. |
| Impact | Update for 2016/7: CHART has successfully partnered with the MRC funded Stratified medicine consortium MATURA, (working on adult RA) to establish cross age comparison of data sets such as genetics of response, starting with genotype data shared on adults and children in relation to response to MTX (Prof Thomson JIA, Prof A Morgan Leeds, RA ) in collaboration with Roche . |
| Start Year | 2015 |
| Description | MATURA - Genetics Partnership |
| Organisation | Versus Arthritis |
| Department | Maximising Therapeutic Utility for Rheumatoid Arthritis |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | The CHARMS study has made key contributions to CHART consortium ( see CHART partnership) CHART has initiated this proposal for a meta analysis between adults and children using available parallel data sets (MATURA- adults with RA /CHART - children with JIA) of genome wide genotypes in patients with response data to MTX when used for inflammatory arthritis . To date CHART has established the group to work on this project and set up the initial discussions and regular TC for project planning. CHART will provide approximately 1600 cases ( JIA) where genotype and response to MTX data are available. |
| Collaborator Contribution | Prof Morgan is leading the genetic analysis of MTX response in RA and will provide approximately 1200 RA cases with genotype and response data . The Leeds team and Manchester teams will both provide statistical analysis expertise. |
| Impact | Update for 2016/7: CHART has successfully partnered with the MRC funded Stratified medicine consortium MATURA, (working on adult RA) to establish cross age comparison of data sets such as genetics of response, starting with genotype data shared on adults and children in relation to response to MTX (Prof Thomson JIA, Prof A Morgan Leeds, RA ) in collaboration with Roche . |
| Start Year | 2015 |
| Description | MTX genetic (SLCO1B1 haplotypes and response) collaboration (updated for 2016/7) |
| Organisation | Cincinnati Children's Hospital Medical Center |
| Country | United States |
| Sector | Hospitals |
| PI Contribution | Provision of CHARMS clinical (response status, JIA subtype, gender) and genotype information, and interpretive support. |
| Collaborator Contribution | Evaluation of SLCO1B1 genetic variation relative to methotrexate response in JIA (following indicated GWAS association with high dose MTX in leukaemia.) CCHMC ran first experiment on their own bank of 213 JIA patients with the required clinical and genetic data available for study. Will use the CHARMS dataset and cases for the purposes of replication. |
| Impact | -Multi disciplinary - genetic and clinical data shared . - CCHMC, used findings from analysis to support an R01 grant application to the NIH in response to PAR-14-274 (Pharmacogenetics, Pharmacoepigenetics and Personalized Medicine in Children) offered by the Eunice Kennedy Shriver Institute for Child Health and Development. - According to CHARMS Steering Committee terms this collaboration will be required to give a report of outcomes in June 2016 For 2016/7 submission: Recent data on specific SNPS related to speed of drug metabolism , have been shared to provide a validation cohort for CHART |
| Start Year | 2016 |
| Description | MTX genetic (SLCO1B1 haplotypes and response) collaboration (updated for 2016/7) |
| Organisation | Versus Arthritis |
| Department | Arthritis Research UK Centre for Genetics and Genomics |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Provision of CHARMS clinical (response status, JIA subtype, gender) and genotype information, and interpretive support. |
| Collaborator Contribution | Evaluation of SLCO1B1 genetic variation relative to methotrexate response in JIA (following indicated GWAS association with high dose MTX in leukaemia.) CCHMC ran first experiment on their own bank of 213 JIA patients with the required clinical and genetic data available for study. Will use the CHARMS dataset and cases for the purposes of replication. |
| Impact | -Multi disciplinary - genetic and clinical data shared . - CCHMC, used findings from analysis to support an R01 grant application to the NIH in response to PAR-14-274 (Pharmacogenetics, Pharmacoepigenetics and Personalized Medicine in Children) offered by the Eunice Kennedy Shriver Institute for Child Health and Development. - According to CHARMS Steering Committee terms this collaboration will be required to give a report of outcomes in June 2016 For 2016/7 submission: Recent data on specific SNPS related to speed of drug metabolism , have been shared to provide a validation cohort for CHART |
| Start Year | 2016 |
| Description | Mechanisms of uveitis in JIA |
| Organisation | University College London |
| Department | Institute of Ophthalmology UCL |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | A team has been built up to address this important new project including Prof A Dick ( UCL Institute of Ophthalmology ) and Dr Colin Chu ( Wellcome fellow) also UCL IOO |
| Collaborator Contribution | Provide m reagents, expertise and mentorship |
| Impact | Too early just started |
| Start Year | 2022 |
| Description | NIHR TRC MUSCULOSKELETAL |
| Organisation | Queen Mary University of London |
| Department | William Harvey Research Institute |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | I was invited to take part in a full day workshop by the NIHR TRC in musculoskeletal disease hosted at QMUL and co hosted by Versus Arthritis , to define and optimise ways of working collaboratively across NIHR sites and MSK centres of excellence . |
| Collaborator Contribution | Contributions in the area of paediatric onset arthritis and myositis |
| Impact | None yet as recently joined |
| Start Year | 2020 |
| Description | PRECEDE study |
| Organisation | Charité - University of Medicine Berlin |
| Country | Germany |
| Sector | Academic/University |
| PI Contribution | This will be an international study which came about as a result of the CHART co-hosted Towards Stratified Medicine in JIA meeting. This study aims to test international protocols for data sharing and collaboration while also answering an important question on the flare rate post biologic withdrawal in JIA. Meeting at PRES Oct 2016 finalising the protocol, and current work is finalising the analysis plan. CHART team members acting as research coordinator on this project. Start Date March 2016. |
| Collaborator Contribution | Our partners have been also working on finalising the protocol and are currently now working on the analysis plan too. They have also been extending invites to other institutions and researchers in JIA to also take part in this collaboration. Working with CHART team members, partners have been consolidating the numbers and degree of available data for this research. |
| Impact | Finalised study protocol, Currently finalising the analysis plan. |
| Start Year | 2016 |
| Description | PRECEDE study |
| Organisation | Cincinnati Children's Hospital Medical Center |
| Department | Division of Rheumatology |
| Country | United States |
| Sector | Hospitals |
| PI Contribution | This will be an international study which came about as a result of the CHART co-hosted Towards Stratified Medicine in JIA meeting. This study aims to test international protocols for data sharing and collaboration while also answering an important question on the flare rate post biologic withdrawal in JIA. Meeting at PRES Oct 2016 finalising the protocol, and current work is finalising the analysis plan. CHART team members acting as research coordinator on this project. Start Date March 2016. |
| Collaborator Contribution | Our partners have been also working on finalising the protocol and are currently now working on the analysis plan too. They have also been extending invites to other institutions and researchers in JIA to also take part in this collaboration. Working with CHART team members, partners have been consolidating the numbers and degree of available data for this research. |
| Impact | Finalised study protocol, Currently finalising the analysis plan. |
| Start Year | 2016 |
| Description | PRECEDE study |
| Organisation | Duke University |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | This will be an international study which came about as a result of the CHART co-hosted Towards Stratified Medicine in JIA meeting. This study aims to test international protocols for data sharing and collaboration while also answering an important question on the flare rate post biologic withdrawal in JIA. Meeting at PRES Oct 2016 finalising the protocol, and current work is finalising the analysis plan. CHART team members acting as research coordinator on this project. Start Date March 2016. |
| Collaborator Contribution | Our partners have been also working on finalising the protocol and are currently now working on the analysis plan too. They have also been extending invites to other institutions and researchers in JIA to also take part in this collaboration. Working with CHART team members, partners have been consolidating the numbers and degree of available data for this research. |
| Impact | Finalised study protocol, Currently finalising the analysis plan. |
| Start Year | 2016 |
| Description | PRECEDE study |
| Organisation | Erasmus MC |
| Country | Netherlands |
| Sector | Hospitals |
| PI Contribution | This will be an international study which came about as a result of the CHART co-hosted Towards Stratified Medicine in JIA meeting. This study aims to test international protocols for data sharing and collaboration while also answering an important question on the flare rate post biologic withdrawal in JIA. Meeting at PRES Oct 2016 finalising the protocol, and current work is finalising the analysis plan. CHART team members acting as research coordinator on this project. Start Date March 2016. |
| Collaborator Contribution | Our partners have been also working on finalising the protocol and are currently now working on the analysis plan too. They have also been extending invites to other institutions and researchers in JIA to also take part in this collaboration. Working with CHART team members, partners have been consolidating the numbers and degree of available data for this research. |
| Impact | Finalised study protocol, Currently finalising the analysis plan. |
| Start Year | 2016 |
| Description | PRECEDE study |
| Organisation | Giannina Gaslini Institute |
| Country | Italy |
| Sector | Hospitals |
| PI Contribution | This will be an international study which came about as a result of the CHART co-hosted Towards Stratified Medicine in JIA meeting. This study aims to test international protocols for data sharing and collaboration while also answering an important question on the flare rate post biologic withdrawal in JIA. Meeting at PRES Oct 2016 finalising the protocol, and current work is finalising the analysis plan. CHART team members acting as research coordinator on this project. Start Date March 2016. |
| Collaborator Contribution | Our partners have been also working on finalising the protocol and are currently now working on the analysis plan too. They have also been extending invites to other institutions and researchers in JIA to also take part in this collaboration. Working with CHART team members, partners have been consolidating the numbers and degree of available data for this research. |
| Impact | Finalised study protocol, Currently finalising the analysis plan. |
| Start Year | 2016 |
| Description | PRECEDE study |
| Organisation | Karolinska Institute |
| Country | Sweden |
| Sector | Academic/University |
| PI Contribution | This will be an international study which came about as a result of the CHART co-hosted Towards Stratified Medicine in JIA meeting. This study aims to test international protocols for data sharing and collaboration while also answering an important question on the flare rate post biologic withdrawal in JIA. Meeting at PRES Oct 2016 finalising the protocol, and current work is finalising the analysis plan. CHART team members acting as research coordinator on this project. Start Date March 2016. |
| Collaborator Contribution | Our partners have been also working on finalising the protocol and are currently now working on the analysis plan too. They have also been extending invites to other institutions and researchers in JIA to also take part in this collaboration. Working with CHART team members, partners have been consolidating the numbers and degree of available data for this research. |
| Impact | Finalised study protocol, Currently finalising the analysis plan. |
| Start Year | 2016 |
| Description | PRECEDE study |
| Organisation | Royal Children's Hospital Melbourne |
| Country | Australia |
| Sector | Hospitals |
| PI Contribution | This will be an international study which came about as a result of the CHART co-hosted Towards Stratified Medicine in JIA meeting. This study aims to test international protocols for data sharing and collaboration while also answering an important question on the flare rate post biologic withdrawal in JIA. Meeting at PRES Oct 2016 finalising the protocol, and current work is finalising the analysis plan. CHART team members acting as research coordinator on this project. Start Date March 2016. |
| Collaborator Contribution | Our partners have been also working on finalising the protocol and are currently now working on the analysis plan too. They have also been extending invites to other institutions and researchers in JIA to also take part in this collaboration. Working with CHART team members, partners have been consolidating the numbers and degree of available data for this research. |
| Impact | Finalised study protocol, Currently finalising the analysis plan. |
| Start Year | 2016 |
| Description | PRECEDE study |
| Organisation | University Hospital of North Norway |
| Country | Norway |
| Sector | Hospitals |
| PI Contribution | This will be an international study which came about as a result of the CHART co-hosted Towards Stratified Medicine in JIA meeting. This study aims to test international protocols for data sharing and collaboration while also answering an important question on the flare rate post biologic withdrawal in JIA. Meeting at PRES Oct 2016 finalising the protocol, and current work is finalising the analysis plan. CHART team members acting as research coordinator on this project. Start Date March 2016. |
| Collaborator Contribution | Our partners have been also working on finalising the protocol and are currently now working on the analysis plan too. They have also been extending invites to other institutions and researchers in JIA to also take part in this collaboration. Working with CHART team members, partners have been consolidating the numbers and degree of available data for this research. |
| Impact | Finalised study protocol, Currently finalising the analysis plan. |
| Start Year | 2016 |
| Description | PRECEDE study |
| Organisation | University Medical Center Utrecht (UMC) |
| Country | Netherlands |
| Sector | Academic/University |
| PI Contribution | This will be an international study which came about as a result of the CHART co-hosted Towards Stratified Medicine in JIA meeting. This study aims to test international protocols for data sharing and collaboration while also answering an important question on the flare rate post biologic withdrawal in JIA. Meeting at PRES Oct 2016 finalising the protocol, and current work is finalising the analysis plan. CHART team members acting as research coordinator on this project. Start Date March 2016. |
| Collaborator Contribution | Our partners have been also working on finalising the protocol and are currently now working on the analysis plan too. They have also been extending invites to other institutions and researchers in JIA to also take part in this collaboration. Working with CHART team members, partners have been consolidating the numbers and degree of available data for this research. |
| Impact | Finalised study protocol, Currently finalising the analysis plan. |
| Start Year | 2016 |
| Description | PRECEDE study |
| Organisation | University of Alabama at Birmingham |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | This will be an international study which came about as a result of the CHART co-hosted Towards Stratified Medicine in JIA meeting. This study aims to test international protocols for data sharing and collaboration while also answering an important question on the flare rate post biologic withdrawal in JIA. Meeting at PRES Oct 2016 finalising the protocol, and current work is finalising the analysis plan. CHART team members acting as research coordinator on this project. Start Date March 2016. |
| Collaborator Contribution | Our partners have been also working on finalising the protocol and are currently now working on the analysis plan too. They have also been extending invites to other institutions and researchers in JIA to also take part in this collaboration. Working with CHART team members, partners have been consolidating the numbers and degree of available data for this research. |
| Impact | Finalised study protocol, Currently finalising the analysis plan. |
| Start Year | 2016 |
| Description | PRECEDE study |
| Organisation | University of Alberta Hospital |
| Country | Canada |
| Sector | Hospitals |
| PI Contribution | This will be an international study which came about as a result of the CHART co-hosted Towards Stratified Medicine in JIA meeting. This study aims to test international protocols for data sharing and collaboration while also answering an important question on the flare rate post biologic withdrawal in JIA. Meeting at PRES Oct 2016 finalising the protocol, and current work is finalising the analysis plan. CHART team members acting as research coordinator on this project. Start Date March 2016. |
| Collaborator Contribution | Our partners have been also working on finalising the protocol and are currently now working on the analysis plan too. They have also been extending invites to other institutions and researchers in JIA to also take part in this collaboration. Working with CHART team members, partners have been consolidating the numbers and degree of available data for this research. |
| Impact | Finalised study protocol, Currently finalising the analysis plan. |
| Start Year | 2016 |
| Description | PRECEDE study |
| Organisation | University of Cologne |
| Country | Germany |
| Sector | Academic/University |
| PI Contribution | This will be an international study which came about as a result of the CHART co-hosted Towards Stratified Medicine in JIA meeting. This study aims to test international protocols for data sharing and collaboration while also answering an important question on the flare rate post biologic withdrawal in JIA. Meeting at PRES Oct 2016 finalising the protocol, and current work is finalising the analysis plan. CHART team members acting as research coordinator on this project. Start Date March 2016. |
| Collaborator Contribution | Our partners have been also working on finalising the protocol and are currently now working on the analysis plan too. They have also been extending invites to other institutions and researchers in JIA to also take part in this collaboration. Working with CHART team members, partners have been consolidating the numbers and degree of available data for this research. |
| Impact | Finalised study protocol, Currently finalising the analysis plan. |
| Start Year | 2016 |
| Description | PRECEDE study |
| Organisation | University of Toronto |
| Country | Canada |
| Sector | Academic/University |
| PI Contribution | This will be an international study which came about as a result of the CHART co-hosted Towards Stratified Medicine in JIA meeting. This study aims to test international protocols for data sharing and collaboration while also answering an important question on the flare rate post biologic withdrawal in JIA. Meeting at PRES Oct 2016 finalising the protocol, and current work is finalising the analysis plan. CHART team members acting as research coordinator on this project. Start Date March 2016. |
| Collaborator Contribution | Our partners have been also working on finalising the protocol and are currently now working on the analysis plan too. They have also been extending invites to other institutions and researchers in JIA to also take part in this collaboration. Working with CHART team members, partners have been consolidating the numbers and degree of available data for this research. |
| Impact | Finalised study protocol, Currently finalising the analysis plan. |
| Start Year | 2016 |
| Description | PRECEDE study |
| Organisation | Uppsala University |
| Country | Sweden |
| Sector | Academic/University |
| PI Contribution | This will be an international study which came about as a result of the CHART co-hosted Towards Stratified Medicine in JIA meeting. This study aims to test international protocols for data sharing and collaboration while also answering an important question on the flare rate post biologic withdrawal in JIA. Meeting at PRES Oct 2016 finalising the protocol, and current work is finalising the analysis plan. CHART team members acting as research coordinator on this project. Start Date March 2016. |
| Collaborator Contribution | Our partners have been also working on finalising the protocol and are currently now working on the analysis plan too. They have also been extending invites to other institutions and researchers in JIA to also take part in this collaboration. Working with CHART team members, partners have been consolidating the numbers and degree of available data for this research. |
| Impact | Finalised study protocol, Currently finalising the analysis plan. |
| Start Year | 2016 |
| Description | Precision decisions to STOP JIA - Dr Rae S M Yeung (updated for 2016/7) |
| Organisation | University of Toronto |
| Country | Canada |
| Sector | Academic/University |
| PI Contribution | The collaborating studies of the CHART Consortium (in particular, CHARMS and CAPS) have identified novel pathways altered by treatment with MTX in JIA, and have a specific focus on biologic agents within JIA. This wealth of data is now being modelled to generate predictive algorithms for use in stratified medicine trials of JIA. Our findings, together with any additional insights from the on-going studies, could contribute to the Canadian effort to develop robust biomarkers for clinical application in childhood arthritis. |
| Collaborator Contribution | Aims in common with CHART consortium - to bridge the gap that exists between our clinical care for JIA patients and understanding the biology, thus influencing the differences in response to treatment interventions in affected children. Objectives of Precision decision to STOP JIA - to develop new biologically based disease taxonomy that will help group patients, thereby providing more evidence-based treatments. Tools to aid in decision making around personalization of treatment plans with these powerful new therapeutic agents are essential. |
| Impact | Update for 2016/7 submission: Precision Decisions to STOP-JIA was awarded funding $385,000 (Canadian Dollars, Arthritis Foundation Awards) in Feb 2016 for a year. CHART and CLUSTER are now working with Prof RY to share data on JIA cases and data about predictors of response - and in a reciprocal arrangement, she will share data with us. |
| Start Year | 2015 |
| Description | Rolling out of new biomarker test in clinical practice |
| Organisation | Great Ormond Street Hospital (GOSH) |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | With the support of SPARKS the team first set up , validated and tested the ELISA test for MRP 8/14. This involved comparing normal values for adults and children, testing samples both in UCL ICH and at Munster Germany for comparison, and quantifying the inter and intra assay variation. In addition in - assay standards were generated ( high/medium/low). We next transferred the assay to GOSH Clinical Immunology lab with the considerable support and advice from Dr K Gilmour ( co applicant). The research team have then worked hard to ensure smooth transition of the new predictive biomarker test ( MRP measurement) into clinical care : this has involved working closely with both Immunology lab and MDT clinical team Rheumatology team , as well as engaging with parents and patients to explain the test and research . |
| Collaborator Contribution | Both teams ( GOSH Immunology and Rheumatology) have contributed time, effort and expertise to help make this new test available to patients. |
| Impact | As of FEB 2015 the test became now available for clinicians to use to help advise their patients about 1. which drug is likely to work for treatment of their arthritis and 2. When it is safe to stop the drug when the arthritis appears to be in remission |
| Start Year | 2012 |
| Description | TARGET partnership - Prof.Anne Morgan |
| Organisation | St James's University Hospital (Jimmy's) |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | CHART CMG has agreed to explore ways to share data emerging from TARGET and CHART, subject to appropriate agreements and ethical review. This offers a real opportunity to evaluate common inflammatory processes and molecular signatures of glucocorticoid toxicity and response to methotrexate and IL-6 blockade across inflammatory diseases and in different age groups. JIA research/biomarkers/genetics to act as a comparison for giant cell arteritis population. |
| Collaborator Contribution | TARGET partnership that aims to identify novel diagnostics, stratification biomarkers and treatment options for patients with giant cell arteritis |
| Impact | LoS written from CHART to TARGET, however TARGET was subsequently not funded to enable this to go ahead |
| Start Year | 2015 |
| Title | Translation of the MRP biomarker test into real clinical practice |
| Description | The ELISA for serum MRP testing is commercially available but until now has never been established or validated for use in JIA, in the UK. The test provides doctors and their patients with predictive information about the chance of a drug being effective for arthritis, or for the risk of a flare, when a drug is stopped, if the child has reached apparent clinical remission . |
| Type | Diagnostic Tool - Non-Imaging |
| Current Stage Of Development | Refinement. Clinical |
| Year Development Stage Completed | 2015 |
| Development Status | Under active development/distribution |
| Impact | The test is much in demand by parents as they feel it will reduce uncertainty and thereby reduce burden of the disease on both child and family |
| Title | WEBPARC: Evaluation of a website for parents of children with juvenile idiopathic arthritis |
| Description | The treatment of JIA is often complex, involving a number of different medications, hospital visits and physiotherapy, and some parents find it difficult to manage all of these aspects. There is a great deal of information available on the internet which can help parents to understand more about JIA. There is however a lack of resources which help parents to deal with the daily issues that they and their children could face. "WebParC" is a specially designed website which aims to help teach parents ways to cope, lowing their stress levels and improving their child's wellbeing. The aim of this study is to find out whether using this web-based tool can help to lower stress levels in parents who have children suffering from JIA. |
| Type | Therapeutic Intervention - Psychological/Behavioural |
| Current Stage Of Development | Initial development |
| Year Development Stage Completed | 2016 |
| Development Status | Under active development/distribution |
| Impact | CHARMS patients and parents, and rheumatology professionals including clinical psychologists were interviewed and very involved in the development of WEBPARC. |
| Description | 2017 BRC ICH open day |
| Form Of Engagement Activity | Participation in an open day or visit at my research institution |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | We participated in the British Research Council open day held at the UCL Institute of Child Health. The aim of which is bring science and the work of BRC to wider general public. This day was aimed at children and families and the Rheumatology centered stall taught children about the role of the immune system in the body and how it can malfunction in JIA. The overarching aim of this was to expose the general public to research in science in general. |
| Year(s) Of Engagement Activity | 2017 |
| Description | ARUK Centre for Adolescent Rheumatology at UCL, GOSH and UCLH, Young Persons Focus Groups |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | We have held a series of PPIE/E meetings and focus groups at which young people with JIA have advised on research and projects as well as new grant applications as they are prepared. |
| Year(s) Of Engagement Activity | 2016 |
| Description | Arthritis Digest Newsletter |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Arthritis Digest Newsletter about CLUSTER research and its importance in transnational medicine, with 3 of our CLUSTER Champions commenting on the work. Lead by co-investigator Wendy Thomson. |
| Year(s) Of Engagement Activity | 2019 |
| Description | BBC Radio 4 Interview |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | CHART CMG member Professor Beresford and his colleagues spoke about JIA and associated uveitis in an interview with a patient on BBC Radio 4 show - Inside Health. This is aired live and online for continual engagement. The interview was about the symptoms of JIA and associated uveitis and how it impacts patient's lives and the new research on the use of combination therapy to best treat this. |
| Year(s) Of Engagement Activity | 2017 |
| URL | http://www.bbc.co.uk/programmes/b096hczd |
| Description | BSPAR Nurses Stratified medicine questionnaire |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | We approached nurses working in Pediatric Rheumatology to answer a questionnaire about Stratified Medicine in JIA, This was to spread awareness of CHART and our current work. It also helped formed some of the application for CLUSTER which was successfully obtained. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Barbra Ansell Address Key points Youtube video |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | As part of the Barbra Ansell inaugural address at BSAPR 2017 Lucy was asked to summarise the key points which was put as video on Youtube for continual dissemination. This means those who could not attend the meeting were able to hear what was said. |
| Year(s) Of Engagement Activity | 2017 |
| URL | https://www.youtube.com/watch?v=lccuKBoAmAY |
| Description | British Society Paediatric and Adolescent Rheumatology (BSPAR) National Conference Leeds - talk - Tailoring drug treatment of JIA : is personalised medicine within our grasp? Sept 2014 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Type Of Presentation | keynote/invited speaker |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussion Led to lots of enquiries from new Centres wishing to join CHARMS and CHART in due course. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.bspar.org.uk/research |
| Description | British Society of Rheumatology (April 2015) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk within programme about Stratified Medicine on The CHART Consortium. Questions/discussion invited raising support and awareness of the CHART consortium and its work |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.rheumatology.org.uk |
| Description | CAPTURE-JIA (JIA Core Dataset Meeting 21/22nd May 2015.) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | JIA Core Dataset project is headed by CHART CO- PI's & collaborators in Manchester and has enabled CHART to achieve several of its milestones as defined in the grant GANTT chart: - Hold workshops to reach consensus on common core data set - Agree common clinical data set going forward CAPTURE JIA is supported by the CHART "Quick Win" working group, organised and headed by LW/CH/GA, completing the CHART task of evaluating the clinical data available in the current studies, proposing a gold standard dataset to be considered at the JIA Core Dataset meeting. CAPTURE JIA met the following important targets: - Developing a single unified standardised core dataset for JIA that takes into account heterogeneity of purpose (clinical care, NHS Commissioning, National Audit, patient/family perspective, clinical research) in dialogue/agreement with international practitioners and experts in the JIA field - To improve patient care and provide a sustainable source or research-quality data that can be combined across multiple clinical sites, thus increasing power and momentum in JIA research worldwide. By completing the pre-meeting Delphi, and rating 80 proposed data items for collection at all JIA consultations, these were taken into the final consideration and debate. Able to assist and guide the debate as a representative of CHART. - Profile of CHART was raised in a national clinical audience - Long-term effects will be as outlined in the targets above. - Changed perspectives on importance of collecting a quality and standard dataset at all JIA patient consultations and the impact of this on patient care and translational research across the UK |
| Year(s) Of Engagement Activity | 2015 |
| Description | CHARMS- SPARKS Celebrity Funder Visit (October 2015) |
| Form Of Engagement Activity | Participation in an open day or visit at my research institution |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Supporters |
| Results and Impact | One day funder visit (SPARKS) to research facilities, offices and Great Ormond Street Clinics involved in CHARMS study. Included in the audience were several celebrity ambassadors and patrons of SPARKS including CEO executive boards of large industry companies, and high profile sports personalities & commentators. The purpose of the visit was to inspire SPARKS donors and to showcase what the funding for CHARMS continues to achieve. |
| Year(s) Of Engagement Activity | 2015 |
| Description | CHART/UCAN-U Towards Stratified Medicine in JIA International Meeting |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | All major international players in JIA Stratified Medicine were represented at this meeting. 2 day working-meeting in March 2016 to be held at UCL London UK. The concept of the meeting, co-hosted by CHART and UCAN-U (Utrecht), is to bring together key international scientists, clinicians and experts working in clinical and translational fields of stratified medicine for juvenile idiopathic arthritis who would like to further collaborate and devise ways to speed progress in this area. The overarching goals of the meeting were: • Facilitate new collaborations between existing researchers to enable meta analyses, validation studies, new studies and/or new grant applications. • Reach consensus on the harmonisation of standard operating procedures for the collection and processing of biological samples • Examine and look to overcome the barriers to data sharing to accelerate the pace of understanding of heterogeneity and drug response in JIA. |
| Year(s) Of Engagement Activity | 2016 |
| Description | CLUSTER Consortium Champions (CCCs) First Meeting and Concept of Public Research Working Group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | Creation of patient, parent and public working group within workstream 5 of CLUSTER. The CLUSTER Consortium Champions (CCC) are individuals who are already members of the CLUSTER NETWORK. They will have the important role of gathering information from the network and represent their views for the CLUSTER Consortium. The CHAMPIONS will express the thoughts, interests and ideas of patients, parents, families, charity representatives, stakeholders and the public. Champions will represent the CLUSTER Patient and Parent Network (PPN) at events, online and at a variety of CLUSTER meetings. Champions concept was developed and reached out for applications to multiple institutes, networks and charities associated with the CLUSTER Consortium and its stakeholders. 7 Champions were selected that represent various stakeholders, charities, networks and patient and parents. Working group will move forward in the future to be at events, consortium management board meetings and promote the network and the CLUSTER Consortium through their networks, charities and contacts to be include of the UK and inclusive of all individuals. |
| Year(s) Of Engagement Activity | 2019 |
| Description | CLUSTER Consortium Social Media |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Twitter and Youtube social media created for CLUSTER Consortium to engage public, researchers, industry, clinicians, charities, media and patient and parent networks. Social media channels will present updates on the consortium, events, and contacts to public. CLUSTER Consortium launch was live-streamed via Twitter channel which has produced 500 views. |
| Year(s) Of Engagement Activity | 2019,2020,2021,2022,2023 |
| Description | CLUSTER Consortium Website |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | CLUSTER Consortium website developed to introduce the consortium to the public, and provide information on the project. Contact page and about us page developed to provide contact details of Co-investigators on the project. Contact us for direct access to consortium management and PPIE officers. Events page to show events, focus groups and meetings for public. Publications released under the consortium will be present. Mailing list developed and integrated into website for research, industry, public and patients. |
| Year(s) Of Engagement Activity | 2019 |
| Description | CLUSTER PPIE engagement |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | As part of the application process for CLUSTER we ran multiple Parent and patient engagement sessions across 2017. This included work with charity Oliva's Vision to send out a questionnaire for parent feedback to over 100 parents of children with uveitis. This will be used for a scientific paper. Other engagement sessions brought together focus groups of parents and patients affected by JIA to help discuss future research and the direction they want to see this go. This resulted in formation of the successful CLUSTER grant and the appointment of a parent lead and patient lead who are integral to the running of CLUSTER. |
| Year(s) Of Engagement Activity | 2017 |
| Description | CLUSTER patient group |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | A parent and patient group was held in Oct 2017 to discuss the outputs from CHART and work towards the development of the CLUSTER application which was relevant and well understood by the patients affected. This created a good discussion and ideas which were added into the successful CLUSTER application. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Cambridge UK: Mini Symposium - Paediatric Rheumatology |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Cambridge UK: Mini Symposium - Paediatric Rheumatology talk title: Stratified medicine in juvenile arthritis: getting the right medicines to the right kids. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Clinical meeting in JIA TSG at BSPAR |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | This was a discussion at the JIA Topic specific group at the annual BSPAR meeting. Attended by doctors, nursers, researchers and trainees who have a interest in JIA research. CLUSTER consortium was presented and attendees asked questions about their understanding the importance of this research to help form the CLUSTER application. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Expert working party on JIA Stratified Medicine (Utrecht NL) (April 2015) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Third sector organisations |
| Results and Impact | One day International Working party led by UCAN-U to start working on research sample collection laboratory SOPs comparison. This led to a secondment and exchange between CHART and UCAN-U (see secondment RS & JW) |
| Year(s) Of Engagement Activity | 2015 |
| Description | Host and speaker at Versus Arthritis International Scientific Panel joint meeting Oct 2020 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Professor Wedderbrun acted as host of the Versus Arthritis International Scientific Panel meeting, presented and attended an external site visit |
| Year(s) Of Engagement Activity | 2020 |
| Description | Hyrich, K. The UK Biologics Registers for JIA: Lessons Learned and Future Directions. (BSPAR Conference, Manchester 2016). |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk on the BSPAR-ETN and BCRD registers (two of the four partner CHART studies) providing updates on progress and findings to the British Paedatric Rheumatology Scoiety community. |
| Year(s) Of Engagement Activity | 2016 |
| URL | http://www.bsparmanchester2016.co.uk/wp-content/uploads/2016/11/BSPAR_2016_Programme.pdf |
| Description | Invited Speaker Pfizer Symposium - Paediatric Rheumatology European Society Congress in Lisbon, Portugal |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited Speaker Pfizer Symposium - Paediatric Rheumatology European Society Congress in Lisbon, Portugal. Pfizer symposium : Stratified Medicine in childhood arthritis. |
| Year(s) Of Engagement Activity | 2018 |
| Description | JIA CSG talk |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Lucy Wedderburn spoke at the JIA Clinical study group meeting. Attended by clinicians and academics who have a interest in JIA across the UK. This was a key engagement activity of CHART to reach the clinical research community in Paediatric Rheumatology across the UK. This meeting led directly to the agreement of the UK CSG in Paed Rheum to work with CHART and then be a partner in the CLUSTER Consortium. |
| Year(s) Of Engagement Activity | 2017 |
| Description | JIA Evolving Treatment Strategies: Can we do better and how? (PReS Conference, Genoa, Sept 2016). |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk at Paediatric Rheumatology European Society as part of a satellite session sponsored by Pfizer 'Treatment strategies in JIA: where have we come from, where are we going? featuring international researchers and clinicians and the JIA patient and charitable community. The objectives of this session were to: Review outstanding unmet medical needs in JIA, Discuss best practice study designs for future therapies in JIA, and Consider the role of emerging therapies and their place in the treatment paradigm. This talk used CHART as an exemplifier to discuss clinical considerations for JIA treatment choice within the currently available options, the role of available therapies in different JIA categories, Prediction of response to treatment: what would 'personalised' medicine look like in JIA?, and failings in current paediatric study designs. The session instigated a panel discussion and interactive audience voting on: (1) Study designs for paediatric patients: key considerations; (2)The role of available therapies in different JIA categories; (3) The role of biosimilars in this context; (4) How to create a better evidence base. |
| Year(s) Of Engagement Activity | 2016 |
| Description | JIA Pathogenesis: What we have understood so far (PReS Conference, Genoa Sept 2016). |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation to the Paediatric Rheumatology European Society on JIA Pathogenesis as part of a session on 'Immune Aspects of JIA.' Session also chaired by Lucy Wedderburn. Talk was focused on the impact and contributions of the CHART consortium partners and studies in this area. Sparked questions and networking after talk which instigated a collaboration with QMUL in Poland, who wished to contribute to the work of CHART by adding to the CHARMS cohort. |
| Year(s) Of Engagement Activity | 2016 |
| Description | K. Hyrich at the British Society for Rheumatology (BSR) 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Professor Hyrich presented a talk titled 'the risk of COVID-19 in patients with Rheumatic and musculoskeletal Disease (RMDs)' at the annual BSR 2022 |
| Year(s) Of Engagement Activity | 2022 |
| Description | Key Note speaker American College of Rheumatology |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Lucy was the invited speaker to give the Key note lecture for the year in review, updating all attendees on the newest developments in translational research as it applies to pediatric rehumatology. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Keynote Speaker ENCA Programme at the Paediatric Rheumatology European Society Congress in Lisbon, Portugal |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Keynote Speaker ENCA Programme at the Paediatric Rheumatology European Society Congress in Lisbon, Portugal. Title: Paediatric Rheumatology: What is new? |
| Year(s) Of Engagement Activity | 2018 |
| Description | Keynote talk at Young investigators meeting Paediatric Rheumatology European Society |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | Paediatric Rheumatology European Society Invited speaker: motivational talk to the Young investigator meeting on how to plan your career journey |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.pres.eu |
| Description | L. Wedderburn at British Society for Rheumatology (BSR) 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Professor Wedderburn presented a talk titled 'Recent clinical and scientific research in Paediatric and Adolescent Rheumatology: how will it influence our practice?' at the BSR annual conference |
| Year(s) Of Engagement Activity | 2022 |
| Description | LW A close up on T cell mechanisms in autoimmunity, Faculty Immunology Yale, USA (2016) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | Overview of T cell mechanisms with focus on JIA, utilising and presenting data from CHARMS and CHART studies. Invited questions afterwards for clarification. |
| Year(s) Of Engagement Activity | 2016 |
| Description | LW EULAR (Annual European Congress of Rheumatology) 2015 "Th1/Th17 in JIA" |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk utilising data from CHARMS. Questions were invited and answered afterwards. |
| Year(s) Of Engagement Activity | 2015 |
| Description | LW Invited Seminar at University of Cambridge Institute for Medical Research: "A close up view on T cell mechanisms in autoimmunity : dissecting childhood arthritis" (Nov, 2015) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | Intended purpose to engage students in the concepts of T cell mechanisms in childhood arthritis and current research. Data from the CHARMS study was shown. |
| Year(s) Of Engagement Activity | 2015 |
| Description | LW Served as part of expert panel for Healthcare Quality Improvement Partnership (HQIP) on JIA - June 2014. WT part of Scientific Steering Committee |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | This expert working party on JIA considered current tools for measurement of disease activity in JIA and which would be most suitable for routine clinical use in the future. LW gave a talk on CHART and CHARMS- Stratified Medicine inJIA Increase in awareness of CHART/CHARMS and their relevant impacts; moving towards a UK wide agreed data set for JIA in both clinical and research activity |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.hqip.org.uk |
| Description | LW UCAN-A Consensus Conference Singapore - Feb 2017 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | LW was invited to attend this consensus conferences for the development of a new research network through Asia - UCAN-A (Understanding Childhood Chronic Aliments Network - Asia) The objectives of the meeting were to define standard operating procedures for the design of translational research project for the diagnosis, intervention and collection of samples and clinical data over the network. Other infrastructure surrounding these research projects were also discussed. This was an engagement activity with clinicians and translational scientists from Europe, North America and Australasia. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Lucy Wedderburn BSR National Webinar COVID-19 Vaccine in Patients with Rheumatic Disease |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Lucy Wedderburn was an expert on BRS Webinar to provide information and discussion on recent changes to primary vaccination schedules for third vaccines, booster jab timelines and why 12-15 year olds are being offered them. 28 Sept 2021 |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.rheumatology.org.uk/events-learning/webinars |
| Description | Media interview |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Media Interview with Hospital Healthcare Europe - not yet published |
| Year(s) Of Engagement Activity | 2024 |
| Description | Member of NIHR Translational research Collaboration , MSK , representing GOSH Biomedical Research Centre ( BRC) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | I represent our NIHR funded BRC form GOSH Hospital at the National NIHR Musculoskeletal Translational research Collaboration |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.nihr.ac.uk/explore-nihr/support/ukmsktrc.htm |
| Description | NRAS JIA Wear Purple Parliamentary event |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | L Wedderburn was an invited speaker to the NRAS For JIA Wear Purple Fundraisers event which celebrated the top fundraisers for the Wear Purple campaign from around the country. Patients and their families were able to hear about the research happening in JIA and meet their MPs. Many families were interested to hear about the research and would like to take part if possible. |
| Year(s) Of Engagement Activity | 2018 |
| URL | https://www.nras.org.uk/celebrating-our-fundraisers-event |
| Description | National Advanced paediatric Rheumatology course held at GOSH |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | National Advanced paediatric Rheumatology course held at GOSH, UK ; reaches about 70 HCPs Title Stratified medicine in Paediatric Rheumatology. |
| Year(s) Of Engagement Activity | 2018 |
| Description | National Launch of the MATURA Forum (Jan 2015) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk "CHART Consortium - stratified medicine in JIA" talk sparked questions and discussion Rose profile of CHART Consortium amongst Adult RA colleagues, opportunities for collaborations were discussed and started |
| Year(s) Of Engagement Activity | 2015 |
| Description | Oral Presentation First Barbara Ansell Address |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited speaker to give the first Barbara Ansell Address at British society of Rheumatology annual general meeting at The Jewels in the crown session. Attended by clinicians and researchers. |
| Year(s) Of Engagement Activity | 2017 |
| Description | PReS and ENCA talk |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | A talk by Lucy Wedderburn to Parent and carers of patients with JIA as well as clinicians and researchers in pediatric rheumatology at the 2017 PReS annual conference. This talk "New developments and new strategies: optimizing life with JIA" This included interactive voting to help parents and patients discuss the important research they would support. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Paediatric and Adolescent Rheumatology Conference (BSPAR) October 2019 Presentation - Research Day |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Lucy Wedderburn presentation at Research Day (Monday 7th October 2019) for Paediatric and Adolescent Rheumatology Conference (BSPAR). Presentation given regarding the CLUSTER Consortium, it's aims, scientific outcomes and Patient and Parent Network (PPN). |
| Year(s) Of Engagement Activity | 2019 |
| Description | Patient group workshop (CLUSTER champions) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Co-production of dissemination materials for MTX trajectory paper - published online Feb 2024 |
| Year(s) Of Engagement Activity | 2024 |
| Description | Patient involvement workshops/discussions (x3) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Multiple patient involvement workshops that helped shape the results and their interpretation, and plan for new project funding based on the results |
| Year(s) Of Engagement Activity | 2021 |
| Description | Personalised Medicine in Childhood Arthritis Grand Round |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | This was a Grand Round talk open to all staff at Great Ormond Street Hospital, which Lucy was an invited guest speaker to present on a topic of interest, focusing on innovative medical challenges and change and the latest research and treatments in specialist areas. This was focused on the CHART work on personalised research in Childhood Arthritis. The goal of this talk was to raise awareness about stratified medicine in the field of childhood arthritis to all staff acorss Europe's largest Paediatric research Hospital GOSH |
| Year(s) Of Engagement Activity | 2017 |
| Description | Plenary talk, Paediatric Rheumatology European Society in Lisbon, 6th September 2018: "The BIG Picture: Getting it right for children and young people." |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Plenary talk, Paediatric Rheumatology European Society in Lisbon, 6th September 2018: "The BIG Picture: Getting it right for children and young people." on the importance of a stratified medicine approach to care of children with JIA / uveitis |
| Year(s) Of Engagement Activity | 2018 |
| Description | Press release |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Press release on published work |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.manchester.ac.uk/discover/news/machine-learning-predicts-response-to-drug-for-arthritis-... |
| Description | SS - "Genome-Wide Association Study of Methotrexate non-response in Juvenile Idiopathic Arthritis" BSPAR Conference 2015 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk at British Society of Paediatric and Rheumatology Society 2015 presented results of preliminary CHART MTX modelling. |
| Year(s) Of Engagement Activity | 2015 |
| Description | South African Rheumatology Assocation Congree Cape Town (March 15 - JIA talk) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk "Tailoring drug treatment of JIA: Is personalised medicine within our grasp? |
| Year(s) Of Engagement Activity | 2015 |
| Description | Speaker at the Immune Biomarker Personalised Medicine Meeting at UCL |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | An event hosted by UCL inviting research pioneers in inflammatory diseases and malignancies to present their approaches in applying immune biomarkers and translating findings into clinical use. Professor Wedderburn held a talk titled 'Immune Biomarkers in Personalising Treatment' |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.ucl.ac.uk/cancer/events/2021/jan/immune-biomarkers-personalising-treatments |
| Description | Stephanie Shoop-Worrall Presenting at virtual EULAR 2021 congerss |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | CLUSTER post-doctoral researcher Stephanie Shoop-Worrall presenting "trajectories of etanercept response in JIA" |
| Year(s) Of Engagement Activity | 2021 |
| Description | Stevie Shoop-Worrall poster presentation at the European Paediatric Rheumatology Congress (PReS) 2021 E-congress |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Stephanie Shoop-Worrall Presenting P43 'trajectories of etanercept response in JIA', E-Poster |
| Year(s) Of Engagement Activity | 2021 |
| Description | Talk at the GOSH NIHR Biomedical research Centre public engagement open day |
| Form Of Engagement Activity | Participation in an open day or visit at my research institution |
| Part Of Official Scheme? | Yes |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | Talk- Children get arthritis too -how research can help Lead to lots of interest from families and young people Patient and Public awareness in the vitality and scope of JIA research. Awareness of the use of healthy controls & requests for volunteers. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.gosh.nhs.uk/research-and-innovation/biomedical-research-centre-brc/brc-news-and-events/ |
| Description | Talk to the National Charity Family weekend, CCAA: Childhood arthritis, biomarkers and the CLUSTER Consortium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | CCAA is a leading JIA charity run by a group of people who, through personal experiences, have a passionate interest in helping support children with JIA and their families; to provide a support network for children with arthritis and their families. Professor Wedderburn presented Childhood arthritis, biomarkers and the CLUSTER Consortium Project at the CCAA National Charity family weekend in September 2021. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Talk to the Versus Arthritis Young Persons volunteer network , Belfast UK |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Talk to the Versus Arthritis Young Persons volunteer network , Belfast UK : very inspiring discussion after the talk |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://versusarthritis.org/about-arthritis/young-people/young-peoples-panel |
| Description | The CLUSTER Consortium Champions (CLUSTER's PPIE Group) presented at the 2021 Paediatric Rheumatology Congress (PReS) 2021 e-Congress |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Members of CLUSTERs Patient, Parent and public engagement group presented their experiences as patients of Juvenile idiopathic arthritis (JIA). |
| Year(s) Of Engagement Activity | 2021 |
| Description | Thomson, W. Update on BSPAR multicentre studies - CAPS, CAPTURE JIA and the HQIP audit (BSPAR Conference, Manchester 2016). |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Delivered progress update on CAPS (Childhood Arthritis Prospective Study) one of the 4 partner CHART studies, as well as CHART group efforts in the CAPTURE JIA and HQIP tasks (creating a standardised clinical/research dataset in JIA) to the British Society of Paediatric Rheumatology community. |
| Year(s) Of Engagement Activity | 2016 |
| URL | http://www.bsparmanchester2016.co.uk/wp-content/uploads/2016/11/BSPAR_2016_Programme.pdf |
| Description | Uveitis family day |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | CLUSTER was invited to a Uveitis family day. This day was for patients with Uveitis and their families to learn more about uveitis, the disease parthenogenesis, clinical management and an update on the current research happening around London in this field. CLUSTER was explained and the potential opportunities it would bring to patients with uveitis. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Versus Arthritis Family Day - Evelina November 2019 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | CLUSTER PPI/E lead Fatjon Dekaj was invited, attended and participated in the Versus Arthritis Family Day at the Evelina Hospital. Presented talk on CLUSTER Consortium, its research aims and its PPN network. Relationships were also developed with the wider Versus Arthritis team, patients, families and the Evelina hospital. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Women in Science Event hosted at Clarence House London UK |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | An event hosted by HRH Duchess of Cornwall and organised by Versus Arthritis to mark contributions of women in science |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.versusarthritis.org/news/2020/february/celebrating-our-female-researchers/ |
| Description | YOURR Patient day on arthritis |
| Form Of Engagement Activity | Participation in an open day or visit at my research institution |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | This was a YOURRheum event was co organised by CLUSTER and YourRheum in order to gain young peoples view on the best design of the CLUSTER launch event and website. Through this event we were able to start designing the website in a way that young people would best engage with it and meet their needs. This also stimulated discussion to have young people form this meeting be on the panel and help with the launch event of CLUSTER |
| Year(s) Of Engagement Activity | 2018 |
| URL | https://yourrheum.org/ |