MICA: Childhood arthritis and its associated uveitis: stratification through endotypes and mechanism to deliver benefit; the CLUSTER Consortium.
Lead Research Organisation:
University College London
Department Name: Institute of Child Health
Abstract
Childhood arthritis, classified under the umbrella term juvenile idiopathic arthritis, JIA, and its associated eye inflammation, JIA-uveitis, can be devastating for both child and family, and impose significant long-term economic burden on society. Despite improvements in the management of JIA, and increasing availability of new medicines, many children still undergo prolonged treatment with multiple drugs that may not work, leaving them exposed to uncontrolled inflammation, side effects, and the damaging effects of disease, which include disability, vision loss, lower quality of life and reduced chances of employment. Early control of childhood arthritis and JIA-uveitis translates to better longterm outcomes and economic benefit. However, current JIA classification does not inform choice of drug for most children, and there are no verified clinical or biological tools with which to predict disease course, select treatment or predict response. Effective strategies allowing doctors to choose the right medicine, at the right time for each child ('stratified medicine'), would increase early remission rates, reduce suffering, improve long-term outcomes and avoid years of treatment with ineffective drugs. To start to address these unmet needs, we established a partnership between 4 large UK JIA cohort studies, the Childhood Arthritis Response to Treatment (CHART) Consortium, representing 5000 children with JIA, with clinical information, biological samples, and new data. Building on our success, and strengthened by important new cohorts and investigators, we now propose an ambitious consortium, CLUSTER, bringing together internationally recognised leaders in childhood arthritis and JIA-uveitis, with new collaborators and industry partners to deliver stratified medicine for JIA. CLUSTER will include multidisciplinary expertise in clinical, molecular, genetic, immunological, and statistical sciences, with 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' (subgroups based on underlying disease mechanism) of childhood arthritis and JIA-uveitis, which more accurately reflect likely treatment response and disease course, linked to biomarkers that are feasible to measure in children, to allow targeted treatment decisions. We will adopt a P4 (predict, prevent, personalise, participatory) approach; our key scientific aims are to:
1. Identify 'biomarkers' (clinical, genetic, protein, gene expression or immune factor) that help predict treatment response in JIA, to allow a more targeted approach to medicine choices and prevent poor long-term outcomes;
2. Identify predictors (clinical, genetic, auto-antibody) of getting uveitis for children with JIA, to improve screening protocols and prevent vision loss;
3. Using specimens from both blood and inflamed joints, undertake state of the art analysis of cells, proteins and gene expression in JIA to define mechanisms of response to treatment and different disease types, and identify new treatments;
4. Integrate and explore all CLUSTER data together to define endotypes in JIA, that predict disease type or treatment response, with associated markers that can be measured, to enable personalised treatment and facilitate patient/parent participation in treatment choices;
5. Establish collaborative agreements with Industry and international partners to ensure that high-quality bio-sample collection and stratification design are used in future trials in childhood arthritis and uveitis.
Our programme of work will speed up the introduction of 'stratified' medicine for children with JIA. Earlier control of inflammation and reduced exposure to side effects will allow children to return to their education and full sporting and family life activities, prevent life long disability and blindness, and reduce costs to the health service and society as a whole.
The overall goal of CLUSTER is to define 'endotypes' (subgroups based on underlying disease mechanism) of childhood arthritis and JIA-uveitis, which more accurately reflect likely treatment response and disease course, linked to biomarkers that are feasible to measure in children, to allow targeted treatment decisions. We will adopt a P4 (predict, prevent, personalise, participatory) approach; our key scientific aims are to:
1. Identify 'biomarkers' (clinical, genetic, protein, gene expression or immune factor) that help predict treatment response in JIA, to allow a more targeted approach to medicine choices and prevent poor long-term outcomes;
2. Identify predictors (clinical, genetic, auto-antibody) of getting uveitis for children with JIA, to improve screening protocols and prevent vision loss;
3. Using specimens from both blood and inflamed joints, undertake state of the art analysis of cells, proteins and gene expression in JIA to define mechanisms of response to treatment and different disease types, and identify new treatments;
4. Integrate and explore all CLUSTER data together to define endotypes in JIA, that predict disease type or treatment response, with associated markers that can be measured, to enable personalised treatment and facilitate patient/parent participation in treatment choices;
5. Establish collaborative agreements with Industry and international partners to ensure that high-quality bio-sample collection and stratification design are used in future trials in childhood arthritis and uveitis.
Our programme of work will speed up the introduction of 'stratified' medicine for children with JIA. Earlier control of inflammation and reduced exposure to side effects will allow children to return to their education and full sporting and family life activities, prevent life long disability and blindness, and reduce costs to the health service and society as a whole.
Technical Summary
Juvenile idiopathic arthritis (JIA) and its associated eye inflammation, JIA-uveitis, can cause long-term disability and poor quality of life for children and well into adult life. Currently there are no validated tools with which to predict disease course or outcome, select treatment or predict response. Our proposal brings together internationally recognised leaders in childhood arthritis, JIA-uveitis, and bioinformatics, with industry, patient and clinical partners, as the CLUSTER consortium. Our goal is to define distinct 'endotypes' or 'strata' of childhood arthritis and JIA-uveitis, reflecting treatment response and disease course; integrate these with prognostic biomarkers; generate stratification algorithms, facilitate targeted treatment choices and propose new therapies.
The specific scientific aims of CLUSTER are to:
1. Discover, replicate and validate biomarkers for prediction of treatment response to drive stratified medicine approaches in JIA and JIA-uveitis;
2. Identify mechanisms and pathways in JIA and JIA-uveitis to define novel therapeutic targets and facilitate stratification;
3. Identify disease and treatment-response strata with markers for stratification;
4. Work with industry partners to deliver new stratified clinical trials in JIA and/or JIA- uveitis.
CLUSTER will build on success of the MRC-funded consortium CHART comprising 5000 JIA cases with biosamples and data (clinical, genetic, omics), and include new cases and cohorts. Initial analyses will inform power calculations for proteome, transcriptome and immunome data generation. Integrated iterative analysis will define strata, biomarkers of response, and enable design of new clinical trials partnering with patients, clinicians and industry. Validated strata with robust predictive biomarkers for JIA and JIA-uveitis will lead to earlier control of inflammation, improved outcomes, reduced disability and exposure to side effects and generate long-term health care savings.
The specific scientific aims of CLUSTER are to:
1. Discover, replicate and validate biomarkers for prediction of treatment response to drive stratified medicine approaches in JIA and JIA-uveitis;
2. Identify mechanisms and pathways in JIA and JIA-uveitis to define novel therapeutic targets and facilitate stratification;
3. Identify disease and treatment-response strata with markers for stratification;
4. Work with industry partners to deliver new stratified clinical trials in JIA and/or JIA- uveitis.
CLUSTER will build on success of the MRC-funded consortium CHART comprising 5000 JIA cases with biosamples and data (clinical, genetic, omics), and include new cases and cohorts. Initial analyses will inform power calculations for proteome, transcriptome and immunome data generation. Integrated iterative analysis will define strata, biomarkers of response, and enable design of new clinical trials partnering with patients, clinicians and industry. Validated strata with robust predictive biomarkers for JIA and JIA-uveitis will lead to earlier control of inflammation, improved outcomes, reduced disability and exposure to side effects and generate long-term health care savings.
Planned Impact
Several groups of stakeholders will benefit directly from this research:
Academia.
The academic beneficiaries of this work will be those directly involved in the Consortium from 5 Universities, and 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, inflammation and targets for treatment, pharmacogenomics, and life course research. In addition those working on other immune mediated inflammatory diseases (IMID) including adult arthritis and psoriasis, will benefit by our commitment to share and translate findings through collaborations across IMID Consortia facilitating meta-analyses across these diseases. In addition to engaging colleagues from across UK, CLUSTER will partner with parallel efforts from across the world (Understanding Childhood Arthritis Network UCAN; Childhood Arthritis Risk factor Identification Study CLARITY, and others). Benefit will come both through new knowledge, replication of findings in new cohorts and shared design of new stratified trials.
Public sector/NHS/policy makers.
The definition of methods with which to predict response to treatment, or specific comorbidities in JIA, will benefit the NHS and reduce economic burden to society. Accurate stratification of JIA patients using biomarkers would reduce uncontrolled disease, enabling HCPs to keep children out of hospital, improve school attendance, and reduce absence from work for parents caring for these children. The availability of validated stratified medicine care pathways would greatly improve management of JIA, benefitting care providers, commissioners and policy makers.
Patients/schools/the public: Throughout CLUSTER we aim to ensure meaningful inclusion and involvement of children, young people and families affected by JIA. As confirmed by our patient engagement in preparing this bid, uncertainty of response when a new drug is first tried causes much anxiety, and serial failure of drugs in resistant cases represents considerable added burden for families dealing with the complexities of a chronic illness. Better precision of treatment will reduce exposure to side effects from ineffective medications, reduce need for concomitant medications such as steroids, which leave long-term damage in growing children, and reduce visual loss. With wide dissemination of results, and implementation of new biomarkers, all patients with JIA (the ~15000 in UK, and many more beyond) and their families would benefit from this progress.
Industry.
Engagement with CLUSTER will provide benefit to Industry partners, including access to large JIA cohorts with biological data, newly defined treatment biomarkers and therapeutic targets, and to our UK-wide network of centres for clinical trials, with strong collaborations through Arthritis Research UK (ARUK)-funded EATC4Children and international trials organisations. For example, UCB have committed significant resource to testing of novel targets on their antibody discovery engine: such targets may well also be valid in adult arthritis, which would be readily testable through IMID/RA-MAP collaborations.
Charities and funders.
Charities and industry partners have already funded studies participating in CLUSTER, for several years. These include major funding from ARUK, for JIA studies (BCRD, CAPS, SYCAMORE, APTITUDE), and infrastructure through EATC4Children and ARUK Centres of Excellence; SPARKS UK and GOSCC: CHARMS study; NIHR: SYCAMORE; and Pfizer: BSPAR-Etanercept study. These agencies and other patient support groups and charities will benefit from realisation of the combined efforts of the CLUSTER studies, and the new knowledge generated. All funders will be acknowledged in resulting literature.
For strategies and methods that will be used by CLUSTER to deliver these impacts, please also see Pathways to Impact statement.
Academia.
The academic beneficiaries of this work will be those directly involved in the Consortium from 5 Universities, and 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, inflammation and targets for treatment, pharmacogenomics, and life course research. In addition those working on other immune mediated inflammatory diseases (IMID) including adult arthritis and psoriasis, will benefit by our commitment to share and translate findings through collaborations across IMID Consortia facilitating meta-analyses across these diseases. In addition to engaging colleagues from across UK, CLUSTER will partner with parallel efforts from across the world (Understanding Childhood Arthritis Network UCAN; Childhood Arthritis Risk factor Identification Study CLARITY, and others). Benefit will come both through new knowledge, replication of findings in new cohorts and shared design of new stratified trials.
Public sector/NHS/policy makers.
The definition of methods with which to predict response to treatment, or specific comorbidities in JIA, will benefit the NHS and reduce economic burden to society. Accurate stratification of JIA patients using biomarkers would reduce uncontrolled disease, enabling HCPs to keep children out of hospital, improve school attendance, and reduce absence from work for parents caring for these children. The availability of validated stratified medicine care pathways would greatly improve management of JIA, benefitting care providers, commissioners and policy makers.
Patients/schools/the public: Throughout CLUSTER we aim to ensure meaningful inclusion and involvement of children, young people and families affected by JIA. As confirmed by our patient engagement in preparing this bid, uncertainty of response when a new drug is first tried causes much anxiety, and serial failure of drugs in resistant cases represents considerable added burden for families dealing with the complexities of a chronic illness. Better precision of treatment will reduce exposure to side effects from ineffective medications, reduce need for concomitant medications such as steroids, which leave long-term damage in growing children, and reduce visual loss. With wide dissemination of results, and implementation of new biomarkers, all patients with JIA (the ~15000 in UK, and many more beyond) and their families would benefit from this progress.
Industry.
Engagement with CLUSTER will provide benefit to Industry partners, including access to large JIA cohorts with biological data, newly defined treatment biomarkers and therapeutic targets, and to our UK-wide network of centres for clinical trials, with strong collaborations through Arthritis Research UK (ARUK)-funded EATC4Children and international trials organisations. For example, UCB have committed significant resource to testing of novel targets on their antibody discovery engine: such targets may well also be valid in adult arthritis, which would be readily testable through IMID/RA-MAP collaborations.
Charities and funders.
Charities and industry partners have already funded studies participating in CLUSTER, for several years. These include major funding from ARUK, for JIA studies (BCRD, CAPS, SYCAMORE, APTITUDE), and infrastructure through EATC4Children and ARUK Centres of Excellence; SPARKS UK and GOSCC: CHARMS study; NIHR: SYCAMORE; and Pfizer: BSPAR-Etanercept study. These agencies and other patient support groups and charities will benefit from realisation of the combined efforts of the CLUSTER studies, and the new knowledge generated. All funders will be acknowledged in resulting literature.
For strategies and methods that will be used by CLUSTER to deliver these impacts, please also see Pathways to Impact statement.
Organisations
- University College London (Lead Research Organisation, Project Partner)
- Versus Arthritis (Co-funder)
- University of California, San Francisco (Collaboration)
- Colorado Retina Center (Collaboration)
- UCAN (Understanding Childhood Arthritis Network) (Collaboration)
- British Society for Paediatric and Adolescent Rheumatology (BSPAR) (Collaboration)
- Pfizer Inc (Collaboration)
- UNIVERSITY OF BIRMINGHAM (Collaboration)
- Children's Chronic Arthritis Association (CCAA) (Collaboration)
- University Children's Hospital Munster (Collaboration)
- Charles University (Collaboration)
- UNIVERSITY HOSPITALS BRISTOL NHS FOUNDATION TRUST (Collaboration)
- Cincinnati Children's Hospital Medical Center (Collaboration, Project Partner)
- UCB Pharma (Collaboration)
- QUEEN'S UNIVERSITY BELFAST (Collaboration)
- UNIVERSITY OF CAMBRIDGE (Collaboration)
- UNIVERSITY OF OXFORD (Collaboration)
- Royal Wolverhampton Hospitals NHS Trust (Collaboration)
- City, University of London (Collaboration, Project Partner)
- Great Ormond Street Hospital (GOSH) (Collaboration)
- Johnson & Johnson (Collaboration)
- Juvenile Arthritis Research (JAR) (Collaboration)
- University of Toronto (Collaboration)
- Children's Hospital Los Angeles (CHLA) (Collaboration)
- National Institutes of Health (NIH) (Collaboration)
- University of Münster (Collaboration, Project Partner)
- NORFOLK AND NORWICH UNIVERSITY HOSPITAL (Collaboration)
- Great North Children's Hospital (GNCH) (Collaboration)
- Children's Mercy Hospital (Collaboration)
- Utrecht University (Collaboration)
- University of Utah Health Care (Collaboration)
- Birmingham Children's Hospital (Collaboration)
- QUEEN MARY UNIVERSITY OF LONDON (Collaboration)
- University College London Hospitals NHS Foundation Trust (Collaboration)
- Janssen Pharmaceutica NV (Collaboration)
- Pfizer Ltd (Collaboration)
- VERSUS ARTHRITIS (Collaboration)
- Roche Pharmaceuticals (Collaboration)
- GREAT ORMOND STREET HOSPITAL FOR CHILDREN NHS FOUNDATION TRUST (Collaboration)
- University Hospital of Münster (Collaboration)
- Addenbrooke's Hospital (Collaboration)
- UNIVERSITY OF LEEDS (Collaboration)
- UNIVERSITY OF LIVERPOOL (Collaboration)
- University of Bristol (Collaboration)
- Johns Hopkins Medicine (Collaboration)
- UNIVERSITY HOSPITAL SOUTHAMPTON NHS FOUNDATION TRUST (Collaboration)
- University College London (Collaboration)
- University of Manchester (Collaboration)
- Pediatric Rheumatology INternational Trials Organisation (PRINTO) (Collaboration)
- Seattle Children's Hospital (Collaboration)
- Farr Institute of Health Informatics Research (Collaboration)
- Sparks Charity (Collaboration)
- Barbara Ansell National Network for Adolescent Rheumatology (Collaboration)
- ALDER HEY CHILDREN'S NHS FOUNDATION TRUST (Collaboration)
- Sheffield Children's NHS Foundation Trust (Collaboration)
- Nottingham University Hospitals NHS Trust (Collaboration)
- Royal Children's Hospital Melbourne (Collaboration)
- Children's Hospital of Philadelphia (Collaboration)
- PReS (Paed Rheumatology European Soc) (Project Partner)
- Great Ormond Street Hospital (Project Partner)
- Olivia's Vision (Project Partner)
- PRINTO (Project Partner)
- Childhood Arthritis and Rheumatology Research Alliance (Project Partner)
- Moorfields Eye Hospital NHS Foundation Trust (Project Partner)
- Children’s Arthritis Association (Project Partner)
- Murdoch Children's Research Institute (Project Partner)
- UCB Pharma (United Kingdom) (Project Partner)
- Bangor University (Project Partner)
- University of Liverpool (Project Partner)
- Barbara Ansell National Network (BANNAR) (Project Partner)
- ICON/GPRD German JIA Cohorts (Project Partner)
- CHARMS Study Parent Representative (Project Partner)
- University of Bristol (Project Partner)
- Farr Institute (Project Partner)
- Royal National Hospital (Project Partner)
- MATURA (Project Partner)
- PRCSG (Ped Rheum Collab Study Group) (Project Partner)
- GlaxoSmithKline (United Kingdom) (Project Partner)
- National Rheumatoid Arthritis Society (Project Partner)
- IMID-BIO-UK partnership (Project Partner)
- AbbVie (United Kingdom) (Project Partner)
- CAPTURE JIA Study (Project Partner)
- Pfizer (United States) (Project Partner)
- Understanding Childhood Arthritis Network (Project Partner)
- Great Ormond St. Hospital Cldrn Charity (Project Partner)
- Roche (United Kingdom) (Project Partner)
- ARUK Centre for Adolescent Rheumatology (Project Partner)
- YOUR RHEUM (Project Partner)
- RA-MAP Consortium (Project Partner)
- British Soc for Paed & Adol Rheum BSPAR (Project Partner)
Publications
100,000 Genomes Project Pilot Investigators
(2021)
100,000 Genomes Pilot on Rare-Disease Diagnosis in Health Care - Preliminary Report.
in The New England journal of medicine
Abraham A
(2021)
Intermediate uveitis associated with MS: Diagnosis, clinical features, pathogenic mechanisms, and recommendations for management.
in Neurology(R) neuroimmunology & neuroinflammation
Akbarali S
(2021)
Imaging-Based Uveitis Surveillance in Juvenile Idiopathic Arthritis: Feasibility, Acceptability, and Diagnostic Performance.
in Arthritis & rheumatology (Hoboken, N.J.)
Al-Julandani DA
(2023)
Outcome of adalimumab monotherapy in paediatric non-infectious uveitis.
in Pediatric rheumatology online journal
Amariuta T
(2020)
Improving the trans-ancestry portability of polygenic risk scores by prioritizing variants in predicted cell-type-specific regulatory elements
in Nature Genetics
Arthur VL
(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 (Hoboken, N.J.)
Beesley R
(2023)
Development and implementation of 'A guide to PPIE-Early Integration into Research Proposals' in a multi-disciplinary consortium.
in Rheumatology (Oxford, England)
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
| Title | A Guide to: PPIE- Early Integration into Research Applications |
| Description | Driven by our patient partners, the CLUSTER Champions, we developed an innovative policy on how to systematically involve parent representatives in grant applications. This step-by-step process is summarised in this infographic published online here https://www.clusterconsortium.org.uk/patients-and-parents/clusters-ppie-policy/. |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2023 |
| Impact | Implementing this process was successful in ensuring the CLUSTER Champions were involved in the early stages of grant applications. Feedback from both the researchers using this process and the Champions was really positive. One key area of improvement identified by both groups is allowing adequate time for meaningful involvement. This means that there is time for all the useful feedback and insights from a patient perspective to be acted upon. This in turn, will provide long term benefits to research outcomes and patients of JIA. |
| URL | https://www.clusterconsortium.org.uk/patients-and-parents/clusters-ppie-policy/ |
| Title | CLUSTER Consortium Newsletter |
| Description | Our second E-Newsletter was published in January 2023. This issue aimed to provide key highlights and achievements from each workstrand to give our network an idea of what CLUSTER had achieved to date in an accessible way. This issue also featured our short film 'JIA Stories' which presents two patient stories and shows why research is so important to them. We also included a spotlight on one of our patient partners in this issue to shine a light on their valuable involvement in CLUSTER. |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2023 |
| Impact | This newsletter was an important step in dissemination of top level progress from our research in the project to date in a lay manner. It was also a successful medium to share our recent events and engagement material and was sent out via several routes including our mailing list and via our Patient and Parent network. |
| URL | https://www.clusterconsortium.org.uk/wp-content/uploads/2023/01/CLUSTER-newsletter-Jan-v2.1-2.pdf |
| 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. |
| Title | CLUSTER Consortium: Fostering Sustainable Communities (Infographic/Booklet) |
| Description | This infographic series was created in A5 booklet format to convey the core strengths of CLUSTER's 'communities' including the research community, CLUSTER Champions (PPIE group), industry partners and future leaders. |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2023 |
| Impact | The booklet was printed and handed out at a recent meeting with Funders and helped to support the key messages of the meeting around the sustainability of CLUSTER beyond the project grant. The digital version will also be uploaded on our website and can be used and adapted for future engagement events. |
| URL | https://www.clusterconsortium.org.uk/wp-content/uploads/2023/03/CLUSTER-Showcase-Booklet_27.02.23-v4... |
| Title | CLUSTER's JIA Stories |
| Description | In this short film, Emma and Jasmine share their experience of living with Juvenile Idiopathic Arthritis and why research into this disease is so important. This film was shared with guests attending a Early Career Researcher Event in October 2022 with hugely positive feedback. It has also been shared on our website and hosted on our YouTube channel. We are hugely grateful to them both for sharing their story. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2022 |
| Impact | Using this short film we were able to bring the patient voice to an event to ensure that the experience of real patients was central to discussion and research planning. This film had really positive feedback from all guests and the majority of Early Career Researchers said they were more likely to involve patients in their research as a result. Now embedded on our webpage, this film helps CLUSTER to convey why research into JIA is so important. |
| URL | https://www.youtube.com/watch?v=LLIPiq_OtGI |
| Description | Advice and leadership on shielding for patients, UK wide Clinical Affairs Group (BSPAR, BSR) |
| Geographic Reach | National |
| Policy Influence Type | Membership of a guideline committee |
| Impact | Provided advice and leadership on shielding for patients, UK wide Clinical Affairs Group (BSPAR, BSR). |
| 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 | Chair Scientific Programme Committee for PReS Congress 2020 ( Prague) |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Influenced training of practitioners or researchers |
| URL | https://www.pres.eu/pres2020/ |
| Description | Contributed to NIHR TRC MSK |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| 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 | Leadership of a patient/parent charity working party on COVID and Paed Rheumatology |
| Geographic Reach | National |
| Policy Influence Type | Contribution to new or improved professional practice |
| Impact | The group is dealing with issues including shielding, vaccination, generating FAQs and information for the paediatric rheumatology population, during the time of the COVID pandemic. The parents came from our CLUSTER Champions group to allow us to develop this team. This work continued well into late 2022 - an example of the advice provided is found here on one of the partner charity website https://www.ccaa.org.uk/coronavirus-support-resources/ |
| URL | https://www.ccaa.org.uk/coronavirus-support-resources/ |
| Description | MRC Rare Diseases Research Steering Group |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | Member of Advisory Board for UCB on role of biologics in uveitis |
| Geographic Reach | Europe |
| 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 | Member of Steering Group for the EULAR COVID-19 Registry |
| Geographic Reach | Europe |
| Policy Influence Type | Membership of a guideline committee |
| Impact | The EULAR - COVID-19 Database is a European paediatric and adult database (in collaboration with the Pediatric Rheumatology European Society (PReS)) to monitor and report on outcomes of "Coronavirus Disease 2019" (COVID-19) occurring in patients with rheumatic and musculoskeletal diseases (RMDs). |
| Description | Membership of Special Expert advisory group for assessment of a NICE Appraisal in JIA |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | NICE assessment of use of Tocilizumab in JIA |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Impact | Children with JIA across the UK now have access to Tocilizumab when the disease is severe and other medications have not worked |
| URL | https://www.nice.org.uk/guidance/ta735/documents/committee-papers |
| 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 | Secretary of Pediatric Rheumatology European Society |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Membership of a guideline committee |
| 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 | ATAP Kennedy Trust for MAPJAG study |
| Amount | £204,284 (GBP) |
| Organisation | The Kennedy Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 11/2020 |
| End | 10/2022 |
| Description | AbbVie - CLUSTER Consortium Funding 2019 |
| Amount | £150,000 (GBP) |
| Organisation | AbbVie Inc |
| Sector | Private |
| Country | United States |
| Start | 10/2019 |
| End | 06/2023 |
| Description | Arthritis Research UK Centre for Adolescent Rheumatology |
| Amount | £2,113,790 (GBP) |
| Organisation | Versus Arthritis |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 04/2018 |
| End | 03/2023 |
| Description | Arthritis Research UK Centre of Excellence funding |
| Amount | £2,000,000 (GBP) |
| Organisation | Versus Arthritis |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 08/2018 |
| End | 07/2023 |
| Description | Biologics for Children with Rheumatic Diseases (BCRD) Study (Extension) |
| Amount | £211,000 (GBP) |
| Organisation | Versus Arthritis |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 01/2021 |
| End | 12/2024 |
| Description | CZI Award: Toward precision medicine for Juvenile Dermatomyositis: Development of a cross-tissue single-cell atlas |
| Amount | $4,000,000 (USD) |
| Funding ID | 2022-316714 |
| Organisation | Chan Zuckerberg Initiative |
| Sector | Private |
| Country | United States |
| Start | 12/2022 |
| End | 11/2026 |
| 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 | 08/2021 |
| 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 | ELIXIR-UK FAIR Data Stewardship Training Fellowship |
| Amount | £3,000 (GBP) |
| Organisation | ELIXIR |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 11/2021 |
| End | 11/2022 |
| 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 | 08/2020 |
| End | 07/2023 |
| Description | Identifying the contribution of B cell immunopathology to juvenile idiopathic arthritis associated uveitis. |
| Amount | £99,275 (GBP) |
| Organisation | Fight for Sight |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 09/2021 |
| End | 08/2024 |
| Description | Janssen Pharmaceutica - the IL-23 pathway in the eye including in uveitis |
| Amount | £717,198 (GBP) |
| Organisation | Janssen Pharmaceutica NV |
| Sector | Private |
| Country | Belgium |
| Start | 06/2020 |
| End | 05/2023 |
| Description | Kennedy Trust ATAP: Multiomic Analysis of Paediatric Joint and Gut inflammation (MAP-JAG) - Clinical Fellow |
| Amount | £88,500 (GBP) |
| Organisation | The Kennedy Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 02/2023 |
| End | 04/2024 |
| Description | MRC Partnership grant award: Tissue research in childhood inflammatory arthritis (TRICIA consortium) |
| Amount | £1,330,800 (GBP) |
| Funding ID | MR/W028557/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2022 |
| End | 07/2027 |
| Description | Mitochondrial dysfunction as a therapeutic target upstream of interferon type 1 in rheumatic disease |
| Amount | £98,719 (GBP) |
| Funding ID | 22936 |
| Organisation | Versus Arthritis |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 08/2022 |
| End | 08/2023 |
| Description | NIHR BRC at GOSH - PhD Fellowship to Ms E Ralph |
| Amount | £123,124 (GBP) |
| Funding ID | 19IR23 |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2020 |
| End | 07/2023 |
| Description | Proessor Lucy R Wedderburn |
| Amount | £80,000 (GBP) |
| Funding ID | NIHR203709 |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 04/2022 |
| End | 03/2026 |
| Description | Sleep disturbances and fatigue in children with Juvenile Dermatomyositis (JDM); a pilot study. |
| Amount | £27,000 (GBP) |
| Funding ID | CHR CHO MH SI-3 |
| Organisation | The Child Health Research Charitable Incorporated Organisation |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 01/2023 |
| End | 12/2023 |
| Description | Sobi - CLUSTER Consortium Partnership and Funding 2019 |
| Amount | £80,000 (GBP) |
| Organisation | SOBI Swedish Orphan Biovitrum AB |
| Sector | Private |
| Country | Sweden |
| Start | 11/2019 |
| End | 06/2023 |
| Description | Study Coordinator UK JDCBS |
| Amount | £20,000 (GBP) |
| Funding ID | W1143 |
| Organisation | Great Ormond Street Hospital Children's Charity (GOSHCC) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 01/2023 |
| End | 12/2023 |
| Description | Tissue-resident CD8+ memory T cell and fibroblast cross-talk in juvenile idiopathic arthritis |
| Amount | £302,262 (GBP) |
| Funding ID | MR/X001393/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 10/2022 |
| End | 10/2025 |
| Description | University of Manchester COVID-19 Philanthropy Pump Priming Awards |
| Amount | £41,359 (GBP) |
| Organisation | University of Manchester |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 02/2021 |
| End | 07/2021 |
| Title | A Guide to: PPIE- Early Integration into Research Applications |
| Description | Driven by our patient partners, the CLUSTER Champions, we developed an innovative policy on how to systematically involve parent representatives in grant applications. This step-by-step process is summarised in this infographic published online here https://www.clusterconsortium.org.uk/patients-and-parents/clusters-ppie-policy/. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | Implementing this process was successful in ensuring the CLUSTER Champions were involved in the early stages of grant applications. Feedback from both the researchers using this process and the Champions was really positive. One key area of improvement identified by both groups is allowing adequate time for meaningful involvement. This means that there is time for all the useful feedback and insights from a patient perspective to be acted upon. This in turn, will provide long term benefits to research outcomes and patients of JIA. |
| URL | https://www.clusterconsortium.org.uk/patients-and-parents/clusters-ppie-policy/ |
| Title | CLUSTER Consortium Data Catalogue |
| Description | Data Catalogue summarising CLUSTER datasets with key information each dataset and our accessing contacts and policies. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | Access to CLUSTER data is regulated according to the conditions of patient consent, study ethics and the CLUSTER Consortium's policies. Access is available to researchers via an application to the CLUSTER data access committee as detailed in the flow chart on this webpage. More details on how CLUSTER handles its data and good data management practices are summarised in an interactive mind map. |
| URL | https://www.clusterconsortium.org.uk/researchers/cluster-datasets-and-data-access/ |
| 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 | Improvements to research infrastructure |
| 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. |
| 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. |
| Title | Sex Bias in COVID-19 Data - Supplementary Table 1 |
| Description | An online search of government websites and published literature was performed for regional data reports on COVID-19 cases that included sex as a variable from 1 st January 2020 up until 1 st June 2020 (Search terms: COVID-19/case/sex/country/data/death/ICU/ITU). In order to ensure unbiased representation from as many regions as possible, a cross check was done using the list of countries reporting data on 'Worldometer', and an attempt was made to include as many regions reporting sex data as possible. Reports were translated using Google translate if they were not in English. Data selection, extraction and synthesisReports were included if they contained sex as a variable in data describing case number, intensive treatment unit (ITU) admission, or mortality. Data were entered directly by individual researchers into an online structured data extraction table. For some sources, counts of male confirmed cases or male deaths were not provided, but percentages of male cases or male deaths were provided instead. To include these sources and avoid biases that might be introduced by their exclusion, we calculated counts of male confirmed cases and male deaths from the reported percentages with rounding to the nearest integer. We acknowledge that this approach assumes that the reported percentages are reflective of the true percentages. For some sources, data included confirmed cases and deaths of unknown sex. For these sources, the reported totals were used where the proportion of unknown sex was small. This approach was preferred to excluding cases of unknown sex in order to avoid bias. The estimates represent the proportion of known male infections and odds ratios for mortality associated with known male sex, and will differ slightly from what the true values would be if the sex had been reported for all cases. Data were available at the level of country or regional summary data representing distinct individuals for each report, but not at the level of covariates for all individuals within a study. Consequently, covariates such as lifestyle, comorbidities, testing method and case type (hospital vs. community) could not be controlled for. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| URL | https://zivahub.uct.ac.za/articles/dataset/Sex_Bias_in_COVID-19_Data_-_Supplementary_Table_1/1295215... |
| Title | Sex Bias in COVID-19 Data - Supplementary Table 1 |
| Description | An online search of government websites and published literature was performed for regional data reports on COVID-19 cases that included sex as a variable from 1 st January 2020 up until 1 st June 2020 (Search terms: COVID-19/case/sex/country/data/death/ICU/ITU). In order to ensure unbiased representation from as many regions as possible, a cross check was done using the list of countries reporting data on 'Worldometer', and an attempt was made to include as many regions reporting sex data as possible. Reports were translated using Google translate if they were not in English. Data selection, extraction and synthesisReports were included if they contained sex as a variable in data describing case number, intensive treatment unit (ITU) admission, or mortality. Data were entered directly by individual researchers into an online structured data extraction table. For some sources, counts of male confirmed cases or male deaths were not provided, but percentages of male cases or male deaths were provided instead. To include these sources and avoid biases that might be introduced by their exclusion, we calculated counts of male confirmed cases and male deaths from the reported percentages with rounding to the nearest integer. We acknowledge that this approach assumes that the reported percentages are reflective of the true percentages. For some sources, data included confirmed cases and deaths of unknown sex. For these sources, the reported totals were used where the proportion of unknown sex was small. This approach was preferred to excluding cases of unknown sex in order to avoid bias. The estimates represent the proportion of known male infections and odds ratios for mortality associated with known male sex, and will differ slightly from what the true values would be if the sex had been reported for all cases. Data were available at the level of country or regional summary data representing distinct individuals for each report, but not at the level of covariates for all individuals within a study. Consequently, covariates such as lifestyle, comorbidities, testing method and case type (hospital vs. community) could not be controlled for. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| URL | https://zivahub.uct.ac.za/articles/dataset/Sex_Bias_in_COVID-19_Data_-_Supplementary_Table_1/1295215... |
| 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 | "PEDIA-U" or "Predicting Eye Disease in juvenile idiopathic Arthritis - Uveitis study. |
| Organisation | Cincinnati Children's Hospital Medical Center |
| Country | United States |
| Sector | Hospitals |
| PI Contribution | Letter of support |
| Collaborator Contribution | Letter of support |
| Impact | "Sheila Angeles-Han, MD, MSc from Cincinnati Children's Hospital Medical center was recently awarded a NIH R01 from the National Eye Institute to identify tear biomarkers and genetic risk factors that predict uveitis onset in children with JIA. "PEDIA-U" or "Predicting Eye Disease in juvenile idiopathic Arthritis- Uveitis study." |
| Start Year | 2019 |
| Description | Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Stopping Trial (ADJUST) |
| Organisation | Alder Hey Children's NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | University Hospitals Bristol, recruiting site. Principal Investigator: A V Ramanan Principal Investigator: Andrew Dick Great Ormond Street Hospital, recruiting site. Principal Investigator: Ameenat Solebo Principal Investigator: Clive Edelsten Principal Investigator: Sandrine Lacassagne Principal Investigator: Lucy Wedderburn |
| Collaborator Contribution | Participating site |
| Impact | Partnership just started, academia and clinical, including both rheumatologists and ophthalmologists. |
| Start Year | 2019 |
| Description | Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Stopping Trial (ADJUST) |
| Organisation | Children's Hospital Los Angeles (CHLA) |
| Country | United States |
| Sector | Hospitals |
| PI Contribution | University Hospitals Bristol, recruiting site. Principal Investigator: A V Ramanan Principal Investigator: Andrew Dick Great Ormond Street Hospital, recruiting site. Principal Investigator: Ameenat Solebo Principal Investigator: Clive Edelsten Principal Investigator: Sandrine Lacassagne Principal Investigator: Lucy Wedderburn |
| Collaborator Contribution | Participating site |
| Impact | Partnership just started, academia and clinical, including both rheumatologists and ophthalmologists. |
| Start Year | 2019 |
| Description | Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Stopping Trial (ADJUST) |
| Organisation | Children's Hospital of Philadelphia |
| Country | United States |
| Sector | Hospitals |
| PI Contribution | University Hospitals Bristol, recruiting site. Principal Investigator: A V Ramanan Principal Investigator: Andrew Dick Great Ormond Street Hospital, recruiting site. Principal Investigator: Ameenat Solebo Principal Investigator: Clive Edelsten Principal Investigator: Sandrine Lacassagne Principal Investigator: Lucy Wedderburn |
| Collaborator Contribution | Participating site |
| Impact | Partnership just started, academia and clinical, including both rheumatologists and ophthalmologists. |
| Start Year | 2019 |
| Description | Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Stopping Trial (ADJUST) |
| Organisation | Children's Mercy Hospital |
| Country | United States |
| Sector | Hospitals |
| PI Contribution | University Hospitals Bristol, recruiting site. Principal Investigator: A V Ramanan Principal Investigator: Andrew Dick Great Ormond Street Hospital, recruiting site. Principal Investigator: Ameenat Solebo Principal Investigator: Clive Edelsten Principal Investigator: Sandrine Lacassagne Principal Investigator: Lucy Wedderburn |
| Collaborator Contribution | Participating site |
| Impact | Partnership just started, academia and clinical, including both rheumatologists and ophthalmologists. |
| Start Year | 2019 |
| Description | Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Stopping Trial (ADJUST) |
| Organisation | Cincinnati Children's Hospital Medical Center |
| Country | United States |
| Sector | Hospitals |
| PI Contribution | University Hospitals Bristol, recruiting site. Principal Investigator: A V Ramanan Principal Investigator: Andrew Dick Great Ormond Street Hospital, recruiting site. Principal Investigator: Ameenat Solebo Principal Investigator: Clive Edelsten Principal Investigator: Sandrine Lacassagne Principal Investigator: Lucy Wedderburn |
| Collaborator Contribution | Participating site |
| Impact | Partnership just started, academia and clinical, including both rheumatologists and ophthalmologists. |
| Start Year | 2019 |
| Description | Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Stopping Trial (ADJUST) |
| Organisation | Colorado Retina Center |
| Country | United States |
| Sector | Hospitals |
| PI Contribution | University Hospitals Bristol, recruiting site. Principal Investigator: A V Ramanan Principal Investigator: Andrew Dick Great Ormond Street Hospital, recruiting site. Principal Investigator: Ameenat Solebo Principal Investigator: Clive Edelsten Principal Investigator: Sandrine Lacassagne Principal Investigator: Lucy Wedderburn |
| Collaborator Contribution | Participating site |
| Impact | Partnership just started, academia and clinical, including both rheumatologists and ophthalmologists. |
| Start Year | 2019 |
| Description | Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Stopping Trial (ADJUST) |
| Organisation | Great North Children's Hospital (GNCH) |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | University Hospitals Bristol, recruiting site. Principal Investigator: A V Ramanan Principal Investigator: Andrew Dick Great Ormond Street Hospital, recruiting site. Principal Investigator: Ameenat Solebo Principal Investigator: Clive Edelsten Principal Investigator: Sandrine Lacassagne Principal Investigator: Lucy Wedderburn |
| Collaborator Contribution | Participating site |
| Impact | Partnership just started, academia and clinical, including both rheumatologists and ophthalmologists. |
| Start Year | 2019 |
| Description | Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Stopping Trial (ADJUST) |
| Organisation | Great Ormond Street Hospital for Children NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | University Hospitals Bristol, recruiting site. Principal Investigator: A V Ramanan Principal Investigator: Andrew Dick Great Ormond Street Hospital, recruiting site. Principal Investigator: Ameenat Solebo Principal Investigator: Clive Edelsten Principal Investigator: Sandrine Lacassagne Principal Investigator: Lucy Wedderburn |
| Collaborator Contribution | Participating site |
| Impact | Partnership just started, academia and clinical, including both rheumatologists and ophthalmologists. |
| Start Year | 2019 |
| Description | Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Stopping Trial (ADJUST) |
| Organisation | Johns Hopkins Medicine |
| Department | Wilmer Eye Institute |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | University Hospitals Bristol, recruiting site. Principal Investigator: A V Ramanan Principal Investigator: Andrew Dick Great Ormond Street Hospital, recruiting site. Principal Investigator: Ameenat Solebo Principal Investigator: Clive Edelsten Principal Investigator: Sandrine Lacassagne Principal Investigator: Lucy Wedderburn |
| Collaborator Contribution | Participating site |
| Impact | Partnership just started, academia and clinical, including both rheumatologists and ophthalmologists. |
| Start Year | 2019 |
| Description | Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Stopping Trial (ADJUST) |
| Organisation | National Institutes of Health (NIH) |
| Department | National Eye Institute (NEI) |
| Country | United States |
| Sector | Public |
| PI Contribution | University Hospitals Bristol, recruiting site. Principal Investigator: A V Ramanan Principal Investigator: Andrew Dick Great Ormond Street Hospital, recruiting site. Principal Investigator: Ameenat Solebo Principal Investigator: Clive Edelsten Principal Investigator: Sandrine Lacassagne Principal Investigator: Lucy Wedderburn |
| Collaborator Contribution | Participating site |
| Impact | Partnership just started, academia and clinical, including both rheumatologists and ophthalmologists. |
| Start Year | 2019 |
| Description | Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Stopping Trial (ADJUST) |
| Organisation | National Institutes of Health (NIH) |
| Country | United States |
| Sector | Public |
| PI Contribution | University Hospitals Bristol, recruiting site. Principal Investigator: A V Ramanan Principal Investigator: Andrew Dick Great Ormond Street Hospital, recruiting site. Principal Investigator: Ameenat Solebo Principal Investigator: Clive Edelsten Principal Investigator: Sandrine Lacassagne Principal Investigator: Lucy Wedderburn |
| Collaborator Contribution | Participating site |
| Impact | Partnership just started, academia and clinical, including both rheumatologists and ophthalmologists. |
| Start Year | 2019 |
| Description | Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Stopping Trial (ADJUST) |
| Organisation | Royal Children's Hospital Melbourne |
| Country | Australia |
| Sector | Hospitals |
| PI Contribution | University Hospitals Bristol, recruiting site. Principal Investigator: A V Ramanan Principal Investigator: Andrew Dick Great Ormond Street Hospital, recruiting site. Principal Investigator: Ameenat Solebo Principal Investigator: Clive Edelsten Principal Investigator: Sandrine Lacassagne Principal Investigator: Lucy Wedderburn |
| Collaborator Contribution | Participating site |
| Impact | Partnership just started, academia and clinical, including both rheumatologists and ophthalmologists. |
| Start Year | 2019 |
| Description | Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Stopping Trial (ADJUST) |
| Organisation | Seattle Children's Hospital |
| Country | United States |
| Sector | Hospitals |
| PI Contribution | University Hospitals Bristol, recruiting site. Principal Investigator: A V Ramanan Principal Investigator: Andrew Dick Great Ormond Street Hospital, recruiting site. Principal Investigator: Ameenat Solebo Principal Investigator: Clive Edelsten Principal Investigator: Sandrine Lacassagne Principal Investigator: Lucy Wedderburn |
| Collaborator Contribution | Participating site |
| Impact | Partnership just started, academia and clinical, including both rheumatologists and ophthalmologists. |
| Start Year | 2019 |
| Description | Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Stopping Trial (ADJUST) |
| Organisation | Sheffield Children's NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | University Hospitals Bristol, recruiting site. Principal Investigator: A V Ramanan Principal Investigator: Andrew Dick Great Ormond Street Hospital, recruiting site. Principal Investigator: Ameenat Solebo Principal Investigator: Clive Edelsten Principal Investigator: Sandrine Lacassagne Principal Investigator: Lucy Wedderburn |
| Collaborator Contribution | Participating site |
| Impact | Partnership just started, academia and clinical, including both rheumatologists and ophthalmologists. |
| Start Year | 2019 |
| Description | Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Stopping Trial (ADJUST) |
| Organisation | University Hospital Southampton NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | University Hospitals Bristol, recruiting site. Principal Investigator: A V Ramanan Principal Investigator: Andrew Dick Great Ormond Street Hospital, recruiting site. Principal Investigator: Ameenat Solebo Principal Investigator: Clive Edelsten Principal Investigator: Sandrine Lacassagne Principal Investigator: Lucy Wedderburn |
| Collaborator Contribution | Participating site |
| Impact | Partnership just started, academia and clinical, including both rheumatologists and ophthalmologists. |
| Start Year | 2019 |
| Description | Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Stopping Trial (ADJUST) |
| Organisation | University Hospitals Bristol NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | University Hospitals Bristol, recruiting site. Principal Investigator: A V Ramanan Principal Investigator: Andrew Dick Great Ormond Street Hospital, recruiting site. Principal Investigator: Ameenat Solebo Principal Investigator: Clive Edelsten Principal Investigator: Sandrine Lacassagne Principal Investigator: Lucy Wedderburn |
| Collaborator Contribution | Participating site |
| Impact | Partnership just started, academia and clinical, including both rheumatologists and ophthalmologists. |
| Start Year | 2019 |
| Description | Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Stopping Trial (ADJUST) |
| Organisation | University of California, San Francisco |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | University Hospitals Bristol, recruiting site. Principal Investigator: A V Ramanan Principal Investigator: Andrew Dick Great Ormond Street Hospital, recruiting site. Principal Investigator: Ameenat Solebo Principal Investigator: Clive Edelsten Principal Investigator: Sandrine Lacassagne Principal Investigator: Lucy Wedderburn |
| Collaborator Contribution | Participating site |
| Impact | Partnership just started, academia and clinical, including both rheumatologists and ophthalmologists. |
| Start Year | 2019 |
| Description | Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Stopping Trial (ADJUST) |
| Organisation | University of Utah Health Care |
| Country | United States |
| Sector | Hospitals |
| PI Contribution | University Hospitals Bristol, recruiting site. Principal Investigator: A V Ramanan Principal Investigator: Andrew Dick Great Ormond Street Hospital, recruiting site. Principal Investigator: Ameenat Solebo Principal Investigator: Clive Edelsten Principal Investigator: Sandrine Lacassagne Principal Investigator: Lucy Wedderburn |
| Collaborator Contribution | Participating site |
| Impact | Partnership just started, academia and clinical, including both rheumatologists and ophthalmologists. |
| Start Year | 2019 |
| 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 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 | CLUSTER |
| Organisation | University College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Hyrich is co-lead and Manchester is a major data and intellectual contributor. |
| Collaborator Contribution | Hyrich is co-lead and Manchester is a major data and intellectual contributor. |
| Impact | See ResearchFish for the CLUSTER project |
| Start Year | 2018 |
| 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 Medication Study (CHARMS) |
| Organisation | Birmingham Children's Hospital |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | Our team lead this large collaborative study of stratified medicine in childhood arthritis (CHARMS), the largest of its kind in the world. |
| Collaborator Contribution | Manchester University provides leadership on the genetics arm of the study , City Unviersity on the Psychology part of the study Birmingham, Southampton, Muenster, Utrecht, Norfolk and Norwich, GOSH, UCLH assist with recruitment SPARKS provided the original grant for the study |
| Impact | Multi disciplinary, in 3 main themes as below, see also publications: 1. Biomarker work- first study to show that the protein MRP8/14 I a biomarker with which to predict response to medicaiton in JIA; now expanding this work to proteomics to define new and more robust biomarkers with which to predict response 2. Genetics work- several genetic loci identified as associated with response to treatment in JIA, most recently by a full GWAS study of MTX response in JIA 3. Psychology of treatment management in JIA, leading to development of a novel website for parents with JIA ( and recent award of furtehr grant funding) |
| Start Year | 2006 |
| Description | Childhood Arthritis Response to Medication Study (CHARMS) |
| Organisation | City, University of London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Our team lead this large collaborative study of stratified medicine in childhood arthritis (CHARMS), the largest of its kind in the world. |
| Collaborator Contribution | Manchester University provides leadership on the genetics arm of the study , City Unviersity on the Psychology part of the study Birmingham, Southampton, Muenster, Utrecht, Norfolk and Norwich, GOSH, UCLH assist with recruitment SPARKS provided the original grant for the study |
| Impact | Multi disciplinary, in 3 main themes as below, see also publications: 1. Biomarker work- first study to show that the protein MRP8/14 I a biomarker with which to predict response to medicaiton in JIA; now expanding this work to proteomics to define new and more robust biomarkers with which to predict response 2. Genetics work- several genetic loci identified as associated with response to treatment in JIA, most recently by a full GWAS study of MTX response in JIA 3. Psychology of treatment management in JIA, leading to development of a novel website for parents with JIA ( and recent award of furtehr grant funding) |
| Start Year | 2006 |
| Description | Childhood Arthritis Response to Medication Study (CHARMS) |
| Organisation | Great Ormond Street Hospital (GOSH) |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | Our team lead this large collaborative study of stratified medicine in childhood arthritis (CHARMS), the largest of its kind in the world. |
| Collaborator Contribution | Manchester University provides leadership on the genetics arm of the study , City Unviersity on the Psychology part of the study Birmingham, Southampton, Muenster, Utrecht, Norfolk and Norwich, GOSH, UCLH assist with recruitment SPARKS provided the original grant for the study |
| Impact | Multi disciplinary, in 3 main themes as below, see also publications: 1. Biomarker work- first study to show that the protein MRP8/14 I a biomarker with which to predict response to medicaiton in JIA; now expanding this work to proteomics to define new and more robust biomarkers with which to predict response 2. Genetics work- several genetic loci identified as associated with response to treatment in JIA, most recently by a full GWAS study of MTX response in JIA 3. Psychology of treatment management in JIA, leading to development of a novel website for parents with JIA ( and recent award of furtehr grant funding) |
| Start Year | 2006 |
| Description | Childhood Arthritis Response to Medication Study (CHARMS) |
| Organisation | Norfolk and Norwich University Hospital |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | Our team lead this large collaborative study of stratified medicine in childhood arthritis (CHARMS), the largest of its kind in the world. |
| Collaborator Contribution | Manchester University provides leadership on the genetics arm of the study , City Unviersity on the Psychology part of the study Birmingham, Southampton, Muenster, Utrecht, Norfolk and Norwich, GOSH, UCLH assist with recruitment SPARKS provided the original grant for the study |
| Impact | Multi disciplinary, in 3 main themes as below, see also publications: 1. Biomarker work- first study to show that the protein MRP8/14 I a biomarker with which to predict response to medicaiton in JIA; now expanding this work to proteomics to define new and more robust biomarkers with which to predict response 2. Genetics work- several genetic loci identified as associated with response to treatment in JIA, most recently by a full GWAS study of MTX response in JIA 3. Psychology of treatment management in JIA, leading to development of a novel website for parents with JIA ( and recent award of furtehr grant funding) |
| Start Year | 2006 |
| Description | Childhood Arthritis Response to Medication Study (CHARMS) |
| Organisation | Sparks Charity |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Our team lead this large collaborative study of stratified medicine in childhood arthritis (CHARMS), the largest of its kind in the world. |
| Collaborator Contribution | Manchester University provides leadership on the genetics arm of the study , City Unviersity on the Psychology part of the study Birmingham, Southampton, Muenster, Utrecht, Norfolk and Norwich, GOSH, UCLH assist with recruitment SPARKS provided the original grant for the study |
| Impact | Multi disciplinary, in 3 main themes as below, see also publications: 1. Biomarker work- first study to show that the protein MRP8/14 I a biomarker with which to predict response to medicaiton in JIA; now expanding this work to proteomics to define new and more robust biomarkers with which to predict response 2. Genetics work- several genetic loci identified as associated with response to treatment in JIA, most recently by a full GWAS study of MTX response in JIA 3. Psychology of treatment management in JIA, leading to development of a novel website for parents with JIA ( and recent award of furtehr grant funding) |
| Start Year | 2006 |
| Description | Childhood Arthritis Response to Medication Study (CHARMS) |
| Organisation | University College London Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Our team lead this large collaborative study of stratified medicine in childhood arthritis (CHARMS), the largest of its kind in the world. |
| Collaborator Contribution | Manchester University provides leadership on the genetics arm of the study , City Unviersity on the Psychology part of the study Birmingham, Southampton, Muenster, Utrecht, Norfolk and Norwich, GOSH, UCLH assist with recruitment SPARKS provided the original grant for the study |
| Impact | Multi disciplinary, in 3 main themes as below, see also publications: 1. Biomarker work- first study to show that the protein MRP8/14 I a biomarker with which to predict response to medicaiton in JIA; now expanding this work to proteomics to define new and more robust biomarkers with which to predict response 2. Genetics work- several genetic loci identified as associated with response to treatment in JIA, most recently by a full GWAS study of MTX response in JIA 3. Psychology of treatment management in JIA, leading to development of a novel website for parents with JIA ( and recent award of furtehr grant funding) |
| Start Year | 2006 |
| Description | Childhood Arthritis Response to Medication Study (CHARMS) |
| Organisation | University Hospital Southampton NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | Our team lead this large collaborative study of stratified medicine in childhood arthritis (CHARMS), the largest of its kind in the world. |
| Collaborator Contribution | Manchester University provides leadership on the genetics arm of the study , City Unviersity on the Psychology part of the study Birmingham, Southampton, Muenster, Utrecht, Norfolk and Norwich, GOSH, UCLH assist with recruitment SPARKS provided the original grant for the study |
| Impact | Multi disciplinary, in 3 main themes as below, see also publications: 1. Biomarker work- first study to show that the protein MRP8/14 I a biomarker with which to predict response to medicaiton in JIA; now expanding this work to proteomics to define new and more robust biomarkers with which to predict response 2. Genetics work- several genetic loci identified as associated with response to treatment in JIA, most recently by a full GWAS study of MTX response in JIA 3. Psychology of treatment management in JIA, leading to development of a novel website for parents with JIA ( and recent award of furtehr grant funding) |
| Start Year | 2006 |
| Description | Childhood Arthritis Response to Medication Study (CHARMS) |
| Organisation | University of Manchester |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Our team lead this large collaborative study of stratified medicine in childhood arthritis (CHARMS), the largest of its kind in the world. |
| Collaborator Contribution | Manchester University provides leadership on the genetics arm of the study , City Unviersity on the Psychology part of the study Birmingham, Southampton, Muenster, Utrecht, Norfolk and Norwich, GOSH, UCLH assist with recruitment SPARKS provided the original grant for the study |
| Impact | Multi disciplinary, in 3 main themes as below, see also publications: 1. Biomarker work- first study to show that the protein MRP8/14 I a biomarker with which to predict response to medicaiton in JIA; now expanding this work to proteomics to define new and more robust biomarkers with which to predict response 2. Genetics work- several genetic loci identified as associated with response to treatment in JIA, most recently by a full GWAS study of MTX response in JIA 3. Psychology of treatment management in JIA, leading to development of a novel website for parents with JIA ( and recent award of furtehr grant funding) |
| Start Year | 2006 |
| Description | Childhood Arthritis Response to Medication Study (CHARMS) |
| Organisation | University of Münster |
| Country | Germany |
| Sector | Academic/University |
| PI Contribution | Our team lead this large collaborative study of stratified medicine in childhood arthritis (CHARMS), the largest of its kind in the world. |
| Collaborator Contribution | Manchester University provides leadership on the genetics arm of the study , City Unviersity on the Psychology part of the study Birmingham, Southampton, Muenster, Utrecht, Norfolk and Norwich, GOSH, UCLH assist with recruitment SPARKS provided the original grant for the study |
| Impact | Multi disciplinary, in 3 main themes as below, see also publications: 1. Biomarker work- first study to show that the protein MRP8/14 I a biomarker with which to predict response to medicaiton in JIA; now expanding this work to proteomics to define new and more robust biomarkers with which to predict response 2. Genetics work- several genetic loci identified as associated with response to treatment in JIA, most recently by a full GWAS study of MTX response in JIA 3. Psychology of treatment management in JIA, leading to development of a novel website for parents with JIA ( and recent award of furtehr grant funding) |
| Start Year | 2006 |
| Description | Childhood Arthritis Response to Medication Study (CHARMS) |
| Organisation | Utrecht University |
| Country | Netherlands |
| Sector | Academic/University |
| PI Contribution | Our team lead this large collaborative study of stratified medicine in childhood arthritis (CHARMS), the largest of its kind in the world. |
| Collaborator Contribution | Manchester University provides leadership on the genetics arm of the study , City Unviersity on the Psychology part of the study Birmingham, Southampton, Muenster, Utrecht, Norfolk and Norwich, GOSH, UCLH assist with recruitment SPARKS provided the original grant for the study |
| Impact | Multi disciplinary, in 3 main themes as below, see also publications: 1. Biomarker work- first study to show that the protein MRP8/14 I a biomarker with which to predict response to medicaiton in JIA; now expanding this work to proteomics to define new and more robust biomarkers with which to predict response 2. Genetics work- several genetic loci identified as associated with response to treatment in JIA, most recently by a full GWAS study of MTX response in JIA 3. Psychology of treatment management in JIA, leading to development of a novel website for parents with JIA ( and recent award of furtehr grant funding) |
| Start Year | 2006 |
| 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 | Collaboration MRC Biostatistics Unit University of Cambridge |
| Organisation | University of Cambridge |
| Department | MRC Biostatistics Unit |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | 1Collaboration with Dr E Vigorito and team , MRC Biostatistics Unit University of Cambridge: analysis of CLUSTER RNase data to build gene signature bar codes which can track specific cell subsets, with aim to develop biomarkers for clinical trials . |
| Collaborator Contribution | Analysis of CLUSTER RNase data to build gene signature bar codes which can track specific cell subsets, with aim to develop biomarkers for clinical trials . |
| Impact | TBC |
| Start Year | 2023 |
| Description | Collaboration with Juvenile Arthritis Research/COVID-19 European Patient Network |
| Organisation | Juvenile Arthritis Research (JAR) |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Stephanie Shoop-Worrall: Lead data analyst, design projects, present at conferences, draft manuscripts as first author |
| Collaborator Contribution | Provide data, lead on research questions, co-interpret results, revise manuscripts, disseminate to patients/public |
| Impact | Oral presentation: Shoop-Worrall SJW, SMM Verstappen, W Costello et al., 'Trajectories of Anxiety in Children, Young People and Adults with Rheumatic Diseases in the Wake of COVID-19: Results from the COVID-19 European Patient Registry' due at the British Society for Rheumatology (BSR) conference, April 2021 |
| Start Year | 2020 |
| Description | Collaboration with UCB Pharma Inc. |
| Organisation | UCB Pharma |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | Initiated a new discussion and collaboration about a specific cell surface protein as a molecule of possible interest in design of treatments of inflammatory diseases. Initial meeting held under a CDA so currently cannot provide full details. |
| Collaborator Contribution | Initiated a new discussion and collaboration about a specific cell surface protein as a molecule of possible interest in design of treatments of inflammatory diseases. Initial meeting held under a CDA so currently cannot provide full details. |
| Impact | Initial meeting held under a CDA so currently cannot provide full details. |
| Start Year | 2023 |
| 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 | Development of novel protein biomarkers for the prediction of response to treatment in childhood arthritis, within the CHARMS study |
| Organisation | Pfizer Inc |
| Department | Biotherapeutics Division |
| Country | United States |
| Sector | Private |
| PI Contribution | We are leading a novel proteomic study in Juvenile arthritis ; this work links directly to our MRP projects funded by SPARKS and has already led to novel and exciting biomarkers that we will now test in a larger group of children . |
| Collaborator Contribution | Pfizer will be involved in pathway analysis once the data are ready |
| Impact | Not yet |
| Start Year | 2013 |
| Description | Development of novel protein biomarkers for the prediction of response to treatment in childhood arthritis, within the CHARMS study |
| Organisation | University College London |
| Department | Institute of Child Health |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We are leading a novel proteomic study in Juvenile arthritis ; this work links directly to our MRP projects funded by SPARKS and has already led to novel and exciting biomarkers that we will now test in a larger group of children . |
| Collaborator Contribution | Pfizer will be involved in pathway analysis once the data are ready |
| Impact | Not yet |
| Start Year | 2013 |
| Description | Dr. Kathleen Mulligan Versus Arthritis PhD Studentship Grant Application 2019 |
| Organisation | City, University of London |
| Department | School of Health Sciences |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | CLUSTER Consortium staff met with Dr. Kathleen Mulligan to discuss research proposals, aims and grant application proposal for Versus Arthritis PhD 2019 Studentship. Meeting we discussed research ideas, and discussed methodology and best approach to move research forward and gain PPIE perspective and results for the grant application. Grant proposal was accelerated by promotion through our Patient and Parent Network (PPN) and contacts to discuss patient and parent perspectives on Biomarkers on the grant applications. CLUSTER Consortium stakeholders and associated charities were approached for this collaborative talk. Research outputs from this call were used for the grant application. |
| Collaborator Contribution | Grant proposal was accelerated by promotion through our Patient and Parent Network (PPN) and contacts to discuss patient and parent perspectives on Biomarkers on the grant applications. CLUSTER Consortium stakeholders and associated charities were approached for this collaborative talk. Research outputs from this call were used for the grant application. |
| Impact | Outcome to be determined. |
| Start Year | 2019 |
| Description | JIA Proteomics |
| Organisation | University College London |
| Department | Genetics and Genomic Medicine Programme |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We lead this project to carry out new proteomic screen in JIA respond to medication study (SPARKS-CHARMS) . The two initial rounds of proteomic work have generated several exciting candidates ( proteins which may help to predict response to MTX) , which will now be tested in a new set of patients. |
| Collaborator Contribution | Dr K Mills, ICH leads the proteomic assays |
| Impact | none yet |
| Start Year | 2013 |
| Description | JIA-associated uveitis within the CAPS cohort |
| Organisation | University College London |
| Department | Institute of Child Health |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Access to data and corresponding advice/input |
| Collaborator Contribution | Partner aims to: 1) characterise the ocular phenotypes (ie the differing manifestations of uveitis with regards to clinical course, incidence of ocular complications, response to treatment) of the different sub-types of juvenile idiopathic arthritis (JIA) 2) model the impact of reduced frequency / reduced duration of surveillance examinations on case detection for children at risk of JIA-uveitis This information is necessary for the development of - disease specific management pathways for children at risk of / with JIA-uveitis - phenotype-genotype and phenotype-biomarker linkage studies which will inform disease prognostication and disease pathogenesis |
| Impact | Analysis is ongoing, no outputs as yet. |
| Start Year | 2018 |
| 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 | ORBIT: The IL-23 pathway in the eye including in uveitis (Janssen, Oxford University, University of Bristol and University of Birmingham) |
| Organisation | Janssen Pharmaceutica NV |
| Country | Belgium |
| Sector | Private |
| PI Contribution | There is a partnership between Oxford University OU), University of Bristol (UoB) and University of Birmingham (UoBi) and Janssen called ORBIT. This collaborative partnership recognises the strengths of each unit. UoB - animal models and uveitis, UoB - clinical uveitis OU (kennedy Instittute - Immunology and Janssen (IL-23 pathways). |
| Collaborator Contribution | There is a partnership between Oxford University OU), University of Bristol (UoB) and University of Birmingham (UoBi) and Janssen called ORBIT. This collaborative partnership recognises the strengths of each unit. UoB - animal models and uveitis, UoB - clinical uveitis OU (kennedy Instittute - Immunology and Janssen (IL-23 pathways). |
| Impact | None as yet. |
| Start Year | 2018 |
| Description | ORBIT: The IL-23 pathway in the eye including in uveitis (Janssen, Oxford University, University of Bristol and University of Birmingham) |
| Organisation | University of Birmingham |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | There is a partnership between Oxford University OU), University of Bristol (UoB) and University of Birmingham (UoBi) and Janssen called ORBIT. This collaborative partnership recognises the strengths of each unit. UoB - animal models and uveitis, UoB - clinical uveitis OU (kennedy Instittute - Immunology and Janssen (IL-23 pathways). |
| Collaborator Contribution | There is a partnership between Oxford University OU), University of Bristol (UoB) and University of Birmingham (UoBi) and Janssen called ORBIT. This collaborative partnership recognises the strengths of each unit. UoB - animal models and uveitis, UoB - clinical uveitis OU (kennedy Instittute - Immunology and Janssen (IL-23 pathways). |
| Impact | None as yet. |
| Start Year | 2018 |
| Description | ORBIT: The IL-23 pathway in the eye including in uveitis (Janssen, Oxford University, University of Bristol and University of Birmingham) |
| Organisation | University of Bristol |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | There is a partnership between Oxford University OU), University of Bristol (UoB) and University of Birmingham (UoBi) and Janssen called ORBIT. This collaborative partnership recognises the strengths of each unit. UoB - animal models and uveitis, UoB - clinical uveitis OU (kennedy Instittute - Immunology and Janssen (IL-23 pathways). |
| Collaborator Contribution | There is a partnership between Oxford University OU), University of Bristol (UoB) and University of Birmingham (UoBi) and Janssen called ORBIT. This collaborative partnership recognises the strengths of each unit. UoB - animal models and uveitis, UoB - clinical uveitis OU (kennedy Instittute - Immunology and Janssen (IL-23 pathways). |
| Impact | None as yet. |
| Start Year | 2018 |
| Description | ORBIT: The IL-23 pathway in the eye including in uveitis (Janssen, Oxford University, University of Bristol and University of Birmingham) |
| Organisation | University of Oxford |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | There is a partnership between Oxford University OU), University of Bristol (UoB) and University of Birmingham (UoBi) and Janssen called ORBIT. This collaborative partnership recognises the strengths of each unit. UoB - animal models and uveitis, UoB - clinical uveitis OU (kennedy Instittute - Immunology and Janssen (IL-23 pathways). |
| Collaborator Contribution | There is a partnership between Oxford University OU), University of Bristol (UoB) and University of Birmingham (UoBi) and Janssen called ORBIT. This collaborative partnership recognises the strengths of each unit. UoB - animal models and uveitis, UoB - clinical uveitis OU (kennedy Instittute - Immunology and Janssen (IL-23 pathways). |
| Impact | None as yet. |
| Start Year | 2018 |
| 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 | Role of MRP proteins in prediction of disease and drug response in JIA |
| Organisation | University Children's Hospital Munster |
| Country | Ireland |
| Sector | Hospitals |
| PI Contribution | We have provided samples data and expertise from our JIA CHARMS study to this collaboration |
| Collaborator Contribution | The Munster team have provided expertise and guidance on how to establish and validate the MRP assays |
| Impact | Many papers - see publication lists , with names Wedderburn+ Roth Ability to roll out the MRP test here at GOSH and in the future across the UK |
| Start Year | 2006 |
| 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 | Tissue-resident CD8+ memory T cell and fibroblast cross-talk in juvenile idiopathic arthritis |
| Organisation | University of Birmingham |
| Department | Institute of Inflammation and Ageing |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Tissue-resident CD8+ memory T cell and fibroblast cross-talk in juvenile idiopathic arthritis - PhD Fellowship for Dr C Bolton, collaboration with University of Oxford Prof C Buckley and Uni of Bham Prof A Croft |
| Collaborator Contribution | Tissue-resident CD8+ memory T cell and fibroblast cross-talk in juvenile idiopathic arthritis - PhD Fellowship for Dr C Bolton (UCL), collaboration with University of Oxford Prof C Buckley and Uni of Bham Prof A Croft |
| Impact | Not outputs/outcomes yet |
| Start Year | 2023 |
| Description | Tissue-resident CD8+ memory T cell and fibroblast cross-talk in juvenile idiopathic arthritis |
| Organisation | University of Oxford |
| Department | Medical Sciences Division |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Tissue-resident CD8+ memory T cell and fibroblast cross-talk in juvenile idiopathic arthritis - PhD Fellowship for Dr C Bolton, collaboration with University of Oxford Prof C Buckley and Uni of Bham Prof A Croft |
| Collaborator Contribution | Tissue-resident CD8+ memory T cell and fibroblast cross-talk in juvenile idiopathic arthritis - PhD Fellowship for Dr C Bolton (UCL), collaboration with University of Oxford Prof C Buckley and Uni of Bham Prof A Croft |
| Impact | Not outputs/outcomes yet |
| Start Year | 2023 |
| Description | UCL Rheumatology RNAseq Share collaboration (RSS) |
| Organisation | University College London |
| Department | Division of Medicine |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | UCL Rheumatology RNAseq Share collaboration (RSS) involving collaboration across two departments and 4 cohort studies, co-led by Dr C Ciurtin UCL, has generated large RNAseq data set from across 3 IMIDs in children and YP ( JIA, JSLE, JDM ) and controls. We have GD cohort (gender dysphoria, young adolescents transitioning into their preferred genders) within RSS |
| Collaborator Contribution | UCL Rheumatology RNAseq Share collaboration (RSS) involving collaboration across two departments and 4 cohort studies, co-led by Dr C Ciurtin UCL, has generated large RNAseq data set from across 3 IMIDs in children and YP ( JIA, JSLE, JDM ) and controls. |
| Impact | This collaboration has generated large RNAseq data set from across 3 IMIDs in children and YP ( JIA, JSLE, JDM ) and controls. Data are currently being analysed and feed into many projects. |
| Start Year | 2020 |
| Title | Adalimumab in JIA-associated Uveitis Stopping Trial (ADJUST) |
| Description | The Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Trial (ADJUST) is a multicentred, international trial that will randomise 118 participants aged 2 years and older with controlled JIA-associated uveitis to either continue adalimumab or discontinue adalimumab and receive a placebo. The trial will compare the time to uveitis recurrence between the two groups over 12 months. All participants will receive the standard weight-based dose of adalimumab or placebo: 20 mg biweekly (if < 30 kg) or 40 mg biweekly (if = 30kg). Study is currently in active recruitment. Funding: National Eye Institute, National Institutes of Health, UG1 EY029658 |
| Type | Management of Diseases and Conditions |
| Current Stage Of Development | Early clinical assessment |
| Year Development Stage Completed | 2020 |
| Development Status | Under active development/distribution |
| Clinical Trial? | Yes |
| Impact | Trial still ongoing. |
| Title | ACRcalc |
| Description | ACRcalc is a shiny app to calculate the American College of Rheumatology pediatric and clinical juvenile disease activity scores. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2022 |
| Open Source License? | Yes |
| Impact | CLUSTER members have routinely used ACRcalc to inspect the quality of core variable data and calculate the ACR Pedi and cJADAS scores. |
| URL | https://eur01.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwei-yu-lin.shinyapps.io%2FACRcalc&d... |
| Title | RSSnextflow |
| Description | RSSnextflow is a bioinformatic pipeline designed to analyse UMI-tagged paired-end RNA sequencing data, from sequencing read mapping to gene expression quantification. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | A multi-disease consortium led by UCL has now adopted RSSnextflow to process and analyse the RNAseq data. |
| URL | https://eur01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fgitlab.com%2Fb8307038%2Frssnextflo... |
| Description | 4th Adolescent Rheumatology Symposium |
| 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 | Host and co-lead for a National multi disciplinary meeting reached 120 people, HCPs, charities and patients. Talks covering ARTHRITIS IN ADOLESCENCE PAIN MATTERS SEX AND DRUGS (+/- ROCK 'N ROLL) DEBATE - "This House Believes That Social Media Are An Unnecessary Evil". |
| Year(s) Of Engagement Activity | 2019 |
| Description | A short patient film 'JIA Stories' |
| 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 | Public/other audiences |
| Results and Impact | A short film sharing the experience of two patients with JIA which was created in partnership with our patient partners (The CLUSTER Champions). Originally created to bring the patient voice to a Early Career Researcher event the film has been shared on the CLUSTER website and via social media. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.youtube.com/watch?v=LLIPiq_OtGI |
| Description | A talk or presentation- Melissa Tordoff at 28th PReS Congress 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of a poster at PReS Congress 2022. The title was: "Genetic analysis of whole exome sequencing in a cohort of children with refractory JIA reveals rare genetic risk factors for JIA at loci of known inflammatory diseases" |
| Year(s) Of Engagement Activity | 2022 |
| Description | A talk or presentation- Melissa Tordoff- Paediatric and Adolescent Rheumatology Conference 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Oral presentation entitled "Genetic analysis of whole exome sequencing in a cohort of children with refractory JIA reveals genetic risk factors for rare juvenile diseases." |
| Year(s) Of Engagement Activity | 2022 |
| Description | A talk or presentation- Stephanie Shroop-Worrall- PReS Congress 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Poster presentation at PReS 2022 congress in Prague entitled "CLUSTERS OF JIA AT METHOTREXATE INITIATION IDENTIFIED USING TOPOLOGICAL DATA ANALYSIS" |
| Year(s) Of Engagement Activity | 2022 |
| Description | A talk or presentation- Vicky Alexiou at 28th PReS Congress 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of poster at PReS Congress 2022. The title was: "The potential of CD161+ T cells as a surrogate measure of IL-17A expressing T cells in the synovial fluid of JIA patients" . |
| Year(s) Of Engagement Activity | 2022 |
| Description | AV Ramanan - CHEERS Network and Education Meeting - Paediatric Uveitis Presentation |
| 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 | AV Ramanan Presenting "Current advances in the medical management of paediatric uveitis" at the CHEERS (Children & Adolescent East of England Rheumatology Service) network and education meeting October 2020. |
| Year(s) Of Engagement Activity | 2020 |
| Description | AV Ramanan - PReS 2020 Sobi Symposium Chair |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | "AV Ramanan chair of the SOBI symposium at PReS 2020 - How do I manage systemic juvenile idiopathic arthritis (SJIA)?" |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.pres.eu/pres2020/ |
| Description | AV Ramanan UK Musculoskeletal Translation Research Collaborations Scientific Meeting 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | AV Ramanan presented a talk at the UK Musculoskeletal Translation Research Collaborations Scientific Meeting. Talk titled 'The UK's impact on designing novel adaptive designs for trials in children with rheumatic diseases' 17/01/2022 |
| Year(s) Of Engagement Activity | 2022 |
| Description | Abstract Presentation - Annual European Congress of Rheumatology (EULAR June 2019) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Abstract presentation by CLUSTER PI Professor Wendy Thomson on CLUSTER related output and the CLUSTER Consortium studies at EULAR 2019. Topic - John Bowes (United Kingdom) A. Yarwood, S. Smith, D. Tarasek, W. Thomson on behalf of Childhood Arthritis Prospective Study (CAPS), United Kingdom Juvenile Idiopathic Arthritis Genetics Consortium (UKJIAGC), Childhood Arthritis Response to Medication Study (CHARMS), Biologics for Children with Rheumatic Diseases (BCRD) and BSPAR-Etanercept Study Genetics of juvenile idiopathic arthritis: the identification of a novel risk locus and clinical subgroup analysis - 10:20 - ABSTRACT N° OP0189 |
| Year(s) Of Engagement Activity | 2019 |
| Description | Abstract Presentation - EULAR June 2019 on APTITUDE Trial |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Abstract presentation by CLUSTER Consortium PIs Professors A.V. Ramanan, Andrew Dick & Michael Beresford at EULAR 2019. Topic - Athimalaipet Ramanan (United Kingdom) A. Dick, A. Jones, A. McKay, C. Guly, B. Hardwick, R. Lee, M. Smyth, M. Beresford A phase II single arm (adaptive design) trial of tocilizumab in anti-TNF refractory patients with JIA-associated uveitis (APTITUDE trial) - 08:48 - ABSTRACT N° LB0011 |
| Year(s) Of Engagement Activity | 2019 |
| Description | Advances in Targeted therapies meeting Marseille France , talk: "JIA Pathogenesis unravelling" |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk delivered at Advances in Targeted therapies meeting Marseille France , "JIA Pathogenesis unravelling" |
| Year(s) Of Engagement Activity | 2022 |
| Description | Alyssia McNeece - UCL Versus Arthritis 6th Adolescent Rheumatology Symposium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | CLUSTER PPIE Officer Alyssia McNeece presented: Development and implementation of 'A guide to PPI/E - Early Integration into Research Applications in a multi-disciplinary consortium' |
| Year(s) Of Engagement Activity | 2022 |
| Description | American College of Rheumatology Annual Meeting : Invited Speaker |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | "Moving from AMP Phase 1 to Phase 2 / Invited Speaker" (Virtual talk during COVID-19 pandemic) American College of Rheumatology Annual Meeting |
| Year(s) Of Engagement Activity | 2020 |
| Description | American College of Rheumatology Basic Research Conference, American College of Rheumatology Annual Meeting: Speaker |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | "HLA risk alleles for autoimmune diseases shape the TCR repertoire" / Invited Speaker (Virtual talk during COVID-19 pandemic) American College of Rheumatology Basic Research Conference, American College of Rheumatology Annual Meeting |
| Year(s) Of Engagement Activity | 2020 |
| Description | An evening with Apollo London Society (based at UCL) 'say yes to patient engagement' |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Apollo is an international collaborative project between the EUREKA institute and its partner universities with the aim of supporting students to develop the knowledge, skills, and experience that will support a career in the field of translational medicine. Professor Wedderburn, the CLUSTER PPIE officer and 2 CLUSTER PPIE representatives presented CLUSTER with a focus on the consortiums Patient and Public Involvement and engaged (PPIE) work. Presented and discussed the the policy developed for PPIE involvement in CLUSTER grant applications. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.clusterconsortium.org.uk/cluster-ppie-talk-with-apollo-london/ |
| Description | Annual British Society Rheumatology Congress 2022 Glasgow, key note talk: The year in review. Recent clinical and scientific research : how will it influence our practice? |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Annual British Society Rheumatology Congress 2022 Glasgow, key note talk by L. Wedderburn: The year in review. Recent clinical and scientific research : how will it influence our practice? April 2023 |
| Year(s) Of Engagement Activity | 2022 |
| 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 | Article about CLUSTER Consortium |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Article in MRC news blog about new CLUSTER consortium which Chris Wallace is PI on. A five-year study of childhood arthritis and its linked eye inflammation called uveitis, with the aim of better understanding how to treat the complex condition, which affects one in 1,000 under-16 year olds in the UK. |
| Year(s) Of Engagement Activity | 2018 |
| URL | https://mrc.ukri.org/news/browse/study-of-over-5-000-young-people-to-personalise-treatment-for-child... |
| Description | Award - University of Manchester Outstanding Contribution to Patient and Public Involvement and Engagement 2019 |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Award for CLUSTER staff member Stephanie Shoop-Worrall. Award - University of Manchester Outstanding Contribution to Patient and Public Involvement and Engagement 2019. Award featured on University of Manchester web page and social media (Twitter). |
| Year(s) Of Engagement Activity | 2019 |
| Description | BSPGHAN Annual meeting 2020 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Tailoring treatment of autoimmune diseases in IBD - new therapies and personalised medicine |
| Year(s) Of Engagement Activity | 2020 |
| Description | BSR (British Society of Rheumatology) Conference May 2019 - Invited Speaker |
| 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 | Invited Speaker BSR 2019 Birmingham UK : Lumping or splitting childhood arthritis: what would the most useful strata be and how do we discover them? 2nd May 2019 |
| Year(s) Of Engagement Activity | 2019 |
| Description | Bethany Jebson - UCL Versus Arthritis 6th Adolescent Rheumatology Symposium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Bethany Jebson presented: JIA-Uveitis: a B-cell-driven disease? |
| Year(s) Of Engagement Activity | 2022 |
| Description | Bethany Jebson - PReS 2021 YIM |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Bethany Jebson P23 'JIA-Uveitis - A B-cell driven disease?' E-Poster |
| Year(s) Of Engagement Activity | 2021 |
| Description | Bethany Jebson - PReS 2021 poster Presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Bethany Jebson P23 'JIA-Uveitis - A B-cell driven disease?' YIM lightning round presentation |
| Year(s) Of Engagement Activity | 2021 |
| Description | Bethany Jebson at BSI Annual Conference 2022 "B cell subset abnormalities in the peripheral blood and synovial fluid of JIA patients are independent of ANA status" |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of poster at British Society for Immunology (BSI) Annual Conference 2022 as part of a poster tour by PhD Student Bethany Jebson. The title was "B cell subset abnormalities in the peripheral blood and synovial fluid of JIA patients are independent of ANA status". |
| Year(s) Of Engagement Activity | 2022 |
| Description | British Society of Rheumatology (BSR) Barbara Ansell Lecture - Birmingham May 2019 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Barbara Ansell Lecture' at the British Society of Rheumatology (Birmingham, 2nd May 2019), in which he specifically highlighted and presented the work of CLUSTER, its aims and objectives, and how it is seeking to transform the lives of children and young people growing up with JIA and associated uveitis. |
| Year(s) Of Engagement Activity | 2019 |
| Description | British Society of Rheumatology (BSR) presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Professor AV Ramanan provided a talk titled "Immunomodulation in COVID" to the North West Region members of the BSR (UK) |
| Year(s) Of Engagement Activity | 2021 |
| Description | British Society of Rheumatology Paediatric and Adolescent Rheumatology Conference (BSPAR) - Charity Day - Presentation on CLUSTER Patient & Parent Network (PPN) October 2019 |
| 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 | British Society of Rheumatology Paediatric and Adolescent Rheumatology Conference (BSPAR) - Chairty Day Talk - Wednesday 9th October 2019. 14:00-15:10 Session 10: Charities meeting and update Charity representatives CLUSTER PPIE Coordinator gave presentation to room of research representatives, charity representatives, network representatives and policymakers. Presentation given on the CLUSTER Consortium, it's aims and outcomes, its patient, parent and public network (PPN) and the CLUSTER Consortium Champions (CCCs) concept and how to get involved in the network. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://www.rheumatology.org.uk/events-learning/conferences/paediatric-adolescent-rheumatology-confe... |
| Description | CHARMS Steering Committee |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Supporters |
| Results and Impact | Meeting between researchers, charity sponsors and parent representatives to update on current project progress. |
| Year(s) Of Engagement Activity | 2018 |
| Description | CLUSTER - Manchester PPIE and Research Team Collaborative Meeting and Presentation October 2019 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | CLUSTER PPIE Coordinator (Fatjon Dekaj) met with and presented the CLUSTER Patient & Parent Network (PPN) and the CLUSTER Consortium Champions (CCCs) concept to the University of Manchester Musculoskeletal and Dermatological Sciences team at their weekly studies team meeting. 10-12 members of the team were present for the talk. Presentation lead to collaborative meeting with Dr Janet Mcdonagh & Dr Lis Cordingley, who are part of the YourRheum network, a PPIE stakeholder of CLUSTER, to discuss the PPN network and how to progress relationship between two networks. |
| Year(s) Of Engagement Activity | 2019 |
| Description | CLUSTER Champions - GOSH Consultants COVID Meeting |
| 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 | Discussion with CLUSTER Champions and GOSH consultants to discuss current COVID information and policies on COVID-19. How to dissemintate this informaiton and develop Paed Ehum advice and algorithm. Further develop paed rheum FAQs. Information and further collaboration developed on BSR Patient/Control registry. Development of policy for Rheum-COVID. How to dissemintate this informaiton and develop Paed Ehum advice and algorithm. Further develop paed rheum FAQs. Information and further collaboration developed on BSR Patient/Control registry. |
| Year(s) Of Engagement Activity | 2020 |
| Description | CLUSTER Champions - Kathleen Mulligan Collaboration Grant Discussion (SURE-Path) |
| 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 | Collaborative meeting between Dr. Kathleen Mulligan and the CLUSTER Champions facilitated by FD & ZW, to discuss a collaborative Grant application: SURE-Path: Ensuring implementation of precision medicine to improve the treatment pathway in childhood arthritis. Grant application for SURE-Path: Ensuring implementation of precision medicine to improve the treatment pathway in childhood arthritis. |
| Year(s) Of Engagement Activity | 2020 |
| Description | CLUSTER Champions Integration into CLUSTER Consortium Management Board (CMB) - December 2019 |
| 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 | CLUSTER Champions representatives first appearance in CMB, as per our aim. |
| Year(s) Of Engagement Activity | 2019 |
| 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 Champions In Person Meeting |
| 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 | In person event/workshop with our dedicated patient partners. The CLULSTER Champions, to plan PPIE activity for the remainder of the grant and discuss sustainability of the group. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.clusterconsortium.org.uk/cluster-champions-come-together-for-a-day-of-strategy-and-celeb... |
| Description | CLUSTER Consortium Champions Monthly Teleconferences |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Monthly working group with our dedicated patient representatives, the CLUSTER Champions, working on a range of projects as well as consultation on a range of issues related to CLUSTER's research and dissemination. Include a short feature session in which members of the CLUSTER research team present their work in an accessible way to ensure the Champions are kept up to date with progress. |
| Year(s) Of Engagement Activity | 2021,2022,2023 |
| Description | CLUSTER Consortium Funders Meeting |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | The CLUSTRE Consortium hosted a project meeting with our key funders (MRC, Versus Arthritis and GOSH Children's Charity) to showcase key achievements to date, demonstrate the core strengths of the communities of CLUSTER with a view to stimulate discussions around sustainability beyond the project grant. |
| Year(s) Of Engagement Activity | 2023 |
| Description | CLUSTER Consortium Launch Event |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Supporters |
| Results and Impact | CLUSTER Consortium public launch event hosted at Senate House Library in London. Invited Media, Policymakers, Professional Practitioners, General public, Industry/Business, Supporters/charitable donors, Postgraduate students and carers and/or patient groups. Public launch event presented all aspects and work-streams of the CLUSTER consortium, with presentation by co-investigators, industry representatives and patient and parent representative. Charity collaborators, supporters and donors, industry personnel, families, clinicians and researchers were all represented. 80 physical attendees during the event at Senate House Library for the launch. Launch was live-streamed via CLUSTER Consortium twitter page with international viewership. Live-stream has 550 viewers, with impression from the live-stream reaching 200 observers locally, nationally and internationally. |
| 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 Future Leaders Event |
| 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 | A showcase and networking event for early career researchers (PhD through to new Senior Lecturers/Senior Research Fellows) in Juvenile idiopathic Arthritis (JIA)/JIA-uveitis. A news article reporting on this event was published on the CLUSTER website https://www.clusterconsortium.org.uk/cluster-brings-together-future-leaders-in-jia-research/ |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.clusterconsortium.org.uk/cluster-brings-together-future-leaders-in-jia-research/ |
| Description | CLUSTER PPIE Policy for Early Integration in Grant Applications |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | PPIE policy co-developed with CLUSTER Champions, tested and implemented within the CLUSTER Consortium. This lays out the process to support involvement at the earliest possible stage of new grant applications, whilst acknowledging the real-world context of application time pressures. An infographic summarising this process has been developed with the Champions and is now published on our website. |
| Year(s) Of Engagement Activity | 2022,2023 |
| 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 and Parent Network (PPN) Launch June 2019 |
| 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 | On 22nd June over 40 guests including researchers, charity representatives, JIA network representatives, patients, parents and members of the public attended the launch at Great Ormond Street Hospital, Weston House in London. The aim of the day was to launch the concept of the CLUSTER Consortium Patient and Parent Network (PPN) and present the first draft of the CLUSTER Consortium website. Representation from, CCAA, JIA-Matters, SNAC, NRAS, Versus Arthritis, JAR Project, Radio Lollipop, The Teapot Trust University College London, and Manchester University with participants ranging across all ages and experience. Sessions were split to allow our younger audiences to express their views and feedback in a friendly environment. The second session introduced the network and the CLUSTER Consortium Champions (CCC) concept. The knowledgeable, varied and interactive groups provided excellent feedback on how the network would involve and engage members of the public, charities and networks across the four nations. We also received very enthusiastic feedback on the roles of the Champions, their interaction and responsibilities within the network and the application process. Engaging Strawberry DNA Extraction workshop run by UCL Senior Research Associate Dr Claire Deakin. This gave the opportunity for younger attendees to enjoy some fun science, and provided them with an explanation of the type of research and laboratory work that CLUSTER engages in. Alongside the workshops, art therapy sessions were conducted by the experienced Teapot Trust, coordinated by Gillian Datlen. The younger members produced great work around importance of research, how to get involved and had fun producing a fun mascot for CLUSTER. From the feedback on the day, we are now developing a concept and application process for those interesting in becoming a CLUSTER Consortium Champion. |
| Year(s) Of Engagement Activity | 2019 |
| URL | http://www.clusterconsortium.org.uk/cluster-ppn-launch-22nd-june-2019/ |
| Description | CLUSTER Patient, Parent, Practitioner Involvement and Engagement (PPPIE) Workshop - Royal Manchester Children's Hospital - May 2019 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | CLUSTER Staff member Stephanie Shoop-Worrall organised workshop at Royal Manchester Children's Hospital to present CLUSTER work in a multidisciplinary Patient, Parent, Practitioner Involvement and Engagement (PPPIE) Workshop. Workshop hosted - 2 Physiotherapists, 2 Occupational therapists, 1 Research practitioner, 4 Consultant paediatric rheumatologists, 1 Nurse, 1 Student physiotherapist and 1 Trainee doctor. |
| Year(s) Of Engagement Activity | 2019 |
| Description | CLUSTER Research & Industry Event: An introduction to machine learning for multi-source data integration |
| 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 | First CLUSTER Research & Industry Event: An introduction to machine learning for multi-source data integration. Presenter: Francisco Azuaje, Data & Translational sciences Team, UCB |
| Year(s) Of Engagement Activity | 2020 |
| 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 | Chair for European Paediatric Rheumatology Congress (PReS) 2021 e-Congress Scientific Committee |
| 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 | Professor Athimalaipet Ramanan Chaired the European Paediatric Rheumatology Congress (PReS) 2021 e-Congress Scientific Committee |
| Year(s) Of Engagement Activity | 2021 |
| Description | Chair of Scientific programme committee and opening the Key note address session , 2020 Paediatric Rheumatology European Society Congress |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Prof. Wedderburn - Chair of Scientific programme committee and opening the Key note address session , 2020 Paediatric Rheumatology European Society Congress (September). |
| Year(s) Of Engagement Activity | 2020 |
| Description | Chair of Scientific programme committee, 2020 Paediatric Rheumatology European Society Congress |
| 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 | Chair of PReS Scientific committee 2020. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Distinguished Scientist Seminar series, Immunology and Molecular Pathogenesis (IMP) graduate program, Emory University, Atlanta, GA |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | "Single cell genomics to define mechanisms of immune-mediated diseases" / Invited seminar speaker (Virtual talk during COVID-19 pandemic) Distinguished Scientist Seminar series, Immunology and Molecular Pathogenesis (IMP) graduate program, Emory University, Atlanta, GA |
| Year(s) Of Engagement Activity | 2020 |
| Description | Distinguished lecture University of California Irvine - January 2021 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Distinguished lecture University of California Irvine - January 2021. Entitled: Endophenotype and precision medicine for immune mediated ocular disorders. |
| Year(s) Of Engagement Activity | 2021 |
| Description | EOS 2021: The 19th Emirates Society of Ophthalmology Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Professor AV Ramanan - "Paediatric uveitis - medical management" |
| Year(s) Of Engagement Activity | 2021 |
| Description | ESID 2021 Online Symposium: European Society for Immunodeficiencies |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Professor AV Ramanan "Cytokine directed and JAK inhibitors in uveitis" |
| Year(s) Of Engagement Activity | 2021 |
| Description | EULAR Chair June 2019 - Basic and Translational Science Session |
| 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 | Chair for Basic and Translational Science session - PERSONALISED MEDICINE IN RHEUMATIC DISEASE at EULAR on 12th June 2019. 18:15 - 19:45 SOUTH AUDITORIUM Basic and Translational Science session PERSONALISED MEDICINE IN RHEUMATIC DISEASE Learning objectives: · To see how patient stratification can improve clinical care · To learn about examples where patient stratification was successfully applied Chair(s): Lucy Wedderburn |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://www.congress.eular.org/ |
| Description | EULAR June 2019 Chair - Abstract Session PReS |
| 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 | European League Against Rheumatism 2019 conference. Abstract session chair on 13th June 2019. PReS JOURNEYS FROM BENCH TO BEDSIDE IN PAEDIATRIC RHEUMATOLOGY 10:15 - 11:45 N101/N102 Abstract session PReS JOURNEYS FROM BENCH TO BEDSIDE IN PAEDIATRIC RHEUMATOLOGY Chair(s): Johannes Roth (Germany) Lucy Wedderburn (United Kingdom) |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://www.congress.eular.org/ |
| Description | EULAR-PReS June 2019 Michael Beresford - Presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | 'How to Treat/Manage' talk at the international combined meeting of EULAR/PRES 2019 in Madrid on 14th June 2019, in which he specifically highlighted the work of CLUSTER and its goal to help treatment stratification for children with JIA and its associated uveitis. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Fatjon Dekaj - PReS 2020 Lighnight Round Presentation - Patient/Parent Experience, E-health & Psychosocial Issues |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | "Fatjon Dekaj presenting PReS2020-ABS-1384 CLUSTER CONSORTIUM CHAMPIONS, AND THE IMPORTANCE OF PATIENT AND PARENT INVOLVEMENT AND ENGAGEMENT IN RESEARCH CONSORTIUMS" |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.pres.eu/pres2020/ |
| Description | Fatjon Dekaj - PReS 2020 YIM Session 6 Miscellaneous |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | "Fatjon Dekaj presenting PReS2020-ABS-1384 CLUSTER CONSORTIUM CHAMPIONS, AND THE IMPORTANCE OF PATIENT AND PARENT INVOLVEMENT AND ENGAGEMENT IN RESEARCH CONSORTIUMS at PReS YIM Session 6 Miscellaneous" |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.pres.eu/pres2020/ |
| Description | Federation of Clinical Immunology Societies (FOCIS) Annual Meeting, San Francisco, CA: Invited Speaker |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | "Harnessing the Power of Single-cell Profiling to Decipher the Pathology of Autoimmune Diseases" / Invited Speaker (Virtual talk during COVID-19 pandemic) Federation of Clinical Immunology Societies (FOCIS) Annual Meeting, San Francisco, CA |
| Year(s) Of Engagement Activity | 2020 |
| Description | GOSH BRC Science Board Talk |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | To the GOSH BRC Science Board talk on - CLUSTER: MRC Consortium for stratified medicine in childhood arthritis Reaches 15 people, research and policy making. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Gilead Sciences RA Advisory Board Meeting, San Francisco, CA (Gilead) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | "Genetics and Genomics to Define the Immunologic Basis of Rheumatoid Arthritis" / Invited Speaker Gilead Sciences RA Advisory Board Meeting, San Francisco, CA (Gilead) |
| Year(s) Of Engagement Activity | 2020 |
| Description | Great Ormond Street Hospital - UCL Institute of Child Health Medical Student Tour June 2019 |
| 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 | Other audiences |
| Results and Impact | Tour of Great Ormond STreet Hospital and UCL Institute of Child Health for two pre-medicine university applicants. Discussed CLUSTER consortium and JIA research. Tour provided by Lucy Wedderburn and Emily Robinson. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Guest Lecture: NCPID 2022: 19 Nov 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Guest lecture at the 24th National Conference of Paediatric Infectious Diseases on 19 Nov 2022, in Vellore, India. Talk title: Immuno modulation in PID - lessons learnt from COVID |
| Year(s) Of Engagement Activity | 2022 |
| Description | Guest lecture talk, International Rheumatology Conference Israel. Talk title Age matters : immune development and its impact across arthritis. The Gerald Loewi Memorial Lecture |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Guest lecture talk by L. Wedderburn at International Rheumatology Conference Israel. Talk title Age matters : immune development and its impact across arthritis. The Gerald Loewi Memorial Lecture, March 2022 |
| Year(s) Of Engagement Activity | 2022 |
| Description | Guest speaker: Uvea Rheumatology: 4 Dec 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Guest speaker at UVEA Rheumatology, in Sankara Nethralaya |
| Year(s) Of Engagement Activity | 2022 |
| 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 | IMID-Bio-UK Datathon - TranSMART data analysis workshop June 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 | IMID-Bio-UK Datathon - TranSMART data analysis workshop lead by Michael Barnes on 15th June 2020. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Infographics and Lay Summaries to disseminate research in accessible way |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The CLUSTER Consortium website has a dedicated Parent and Patient section in which our research is explained in an accessible way and new publications are disseminated via lay summaries and infographics. |
| Year(s) Of Engagement Activity | 2022,2023 |
| URL | https://www.clusterconsortium.org.uk/our-research/ |
| 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 | Invited Speaker at the Paediatric Rheumatology European Society Conference 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 | A talk on "Juvenile dermatomyositis : towards targeted therapies" |
| Year(s) Of Engagement Activity | 2018 |
| Description | Invited speaker Seminar series Birmingham Rheumatology/Immunology: Childhood arthritis : from mechanism to stratification |
| 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 Seminar series Birmingham Rheumatology/Immunology: Childhood arthritis : from mechanism to stratification May 2019 |
| Year(s) Of Engagement Activity | 2019 |
| Description | JAR Project - Box of Hope - CLUSTER Collaboration |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Meeting with JAR Project (stakeholder) to discuss their Box of Hope project and, presentation of this project to the clinical and nurse leads at GOSH. JAR Project is a stakeholder of the CLUSTER Consortium and member of the CLUSTER Champions |
| Year(s) Of Engagement Activity | 2020 |
| 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 Matters Family Day Meeting & Planning |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Meeting with JIA Matters charity team, ARUK Adolescent Rheumatology Centre and Great Ormond Street Hospital staff. CLUSTER Consortium was introduced to JIA Matters. CLUSTER work-stream 5 (PPIE) stratgy was intorduced to GOSH staff and JIA Matters charity team. Planning for JIA Matters family event in May, to include CLUSTER plan for family, patient and public involvement. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Joint seminar, Department of Immunology and Microbiology & Division of Rheumatology, University of Colorado School of Medicine, Denver, CO: Invited Speaker |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | "Using single cell technologies to decipher autoimmune and infectious diseases" / Invited seminar Joint seminar, Department of Immunology and Microbiology & Division of Rheumatology, University of Colorado School of Medicine, Denver, CO |
| Year(s) Of Engagement Activity | 2020 |
| 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 | Kathleen Mulligan Versus Arthritis Grant Application 2019 - Collaboration with CLUSTER Patient & Parent Network (PPN) |
| 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 | Collaboration between CLUSTER working staff and its Patient and Parent Network members (3-4 individuals), with Dr. Kathleen Mulligan (City, University of London) for a Versus Arthritis PhD studentship grant application 2019. PhD studentship focused around patient, parent and public views of research biomarkers and their implementation in clinical settings. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://www.versusarthritis.org/research/information-for-applicants/types-of-grant/ |
| 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 | Kimme Hyrich - PReS 2020 COVID Session Presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | How COVID disease affects immune suppressed patients /clinical disease due to COVID in our patients ? |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.pres.eu/pres2020/ |
| Description | Kimme Hyrich BSR Webinar May 2020 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Kimme Hyrich presenting the EULAR COVID-19 Database and the EULAR COVID-19 project in a BSR webinar. Also presented the COVID-19 Global Rheumatology Alliance (GRA) in the webinar. |
| Year(s) Of Engagement Activity | 2020 |
| 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 | Lang Lecture: Stratifying for a molecular and cellular based treatment in ocular inflammatory disease |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Professor Dick presented an outline of cluster during Royal Society of Medicine Lang Lecture in February in 2023. He addressed the pathology, mechanisms of uveitis and the history of treatment toward biologic therapy and discussed the evidence base of current treatment algorithms. He will covered current work that looks to define the disease as a molecular and cellular based taxonomy and then personalizing treatments in a stratified way. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.rsm.ac.uk/events/ophthalmology/2022-23/opr04/ |
| 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 | Lucy Wedderburn PReS 2020 e-Congress Scientific Committee Chair |
| 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 | Lucy Wedderburn Chair for PReS 2020 e-Congress Scientific Committee |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.pres.eu/pres2020/ |
| Description | Lucy Wedderburn PReS 2021 e-Congress Scientific Committee |
| 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 | Lucy Wedderburn on the European Paediatric Rheumatology Congress (PReS) 2021 E-congress comittee |
| Year(s) Of Engagement Activity | 2021 |
| Description | MRC Methodology Research Panel |
| 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 | Member of the MRC Methodology research panel and Methodology advisory board |
| Year(s) Of Engagement Activity | 2019 |
| Description | Media Interview for EULAR TV (Annual European Congress of Rheumatology) June 2019 |
| 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 | Media (as a channel to the public) |
| Results and Impact | Interview with CLUSTER staff member Stephanie Shoop-Worall for Annual European Congress of Rheumatology (EULAR) TV to discuss CLUSTER trajectory work. Interview was recorded and projected during and throughout the conference. Interview was also recorded and uploaded on multiple media sources; Twitter and YouTube (https://www.youtube.com/watch?v=r-XnGIJ-) to further promote and push audience reach. |
| Year(s) Of Engagement Activity | 2019 |
| 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 | Michael W Beresford - UK Musculoskeletal Translation Research Collaborations Scientific Meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Professor MW Beresford - UK EATC4Children: 'Getting it Right for Children and Young People' at the UK Musculoskeletal Translation Research Collaborations Scientific Meeting 17/01/2022 |
| Year(s) Of Engagement Activity | 2021 |
| Description | Moderator at European Alliance of Associates for Rheumatology (EULAR) 2021 e-Congress |
| 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 | Professor Soumya Raychaudhuri moderated talks at EULAR 2021 E-congress |
| Year(s) Of Engagement Activity | 2021 |
| Description | NIH/NIAID TB Research Unit Network (TBRU-N) Annual Meeting, Bethesda, MD |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | "Multimodal memory T cell profiling identifies a reduction in a polyfunctional Th17 state associated with tuberculosis progression" / Invited Speaker (Virtual talk during COVID-19 pandemic) NIH/NIAID TB Research Unit Network (TBRU-N) Annual Meeting, Bethesda, MD |
| Year(s) Of Engagement Activity | 2020 |
| Description | NIHR Biomedical research Centre Rare Diseases meeting, host and convenor |
| 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 | NIHR Biomedical research Centre Rare Diseases meeting, host and convenor (Prof. Lucy Wedderburn) Dec 2020 |
| Year(s) Of Engagement Activity | 2020 |
| Description | NRAS JIA - CLUSTER Collaborative Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Supporters |
| Results and Impact | Meeting with National Rheumatoid Arthritis Society (NRAS) chief executive to discuss collaborative efforts between NRAS and ARUK adolescent rheumatology centre. Meeting presented an introduction to the CLUSTER consortium, its aims, work-streams and purpose. Meeting introduced and discussed WS5 (PPIE) of CLUSTER, its aims and strategy for developing a PPIE network, social media presence and website. |
| Year(s) Of Engagement Activity | 2018,2019 |
| 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 Conference for Paediatric Rheumatology in Chenai, India Presentation September 2019 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Professor A.V. Ramanan gave a talk on Personalised Medicine in JIA at the National Conference for Paediatric Rheumatology in Chenai, India on the 28th September, 2019 |
| Year(s) Of Engagement Activity | 2019 |
| Description | National Rare Disease Day All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions event at Westminster, |
| 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 Rare Disease Day All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions event at Westminster, 28th Feb 2023. Prof Wedderburn attended and participated in this event with the aim of changing Policy and public awareness on rare diseases. |
| Year(s) Of Engagement Activity | 2023 |
| Description | News articles of CLUSTER's events and activity |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Frequent news articles published on the CLUSTER website informing readers of recent events, activity, achievements and publications in an accessible way. |
| Year(s) Of Engagement Activity | 2021,2022,2023 |
| URL | https://www.clusterconsortium.org.uk/news-and-events/ |
| Description | Oral presentation at ACR Nov 2020 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | SSW / KH presenting at online American College of Rheumatology (ACR) Convergence conference in November 2020. "Distinct Patient-level Patterns of Response to Methotrexate in Juvenile Idiopathic Arthritis". |
| Year(s) Of Engagement Activity | 2020 |
| Description | Otto Woolf Lecture |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Otto Woolf Lecture on 'Using genetics and genomics to distinguish immune-mediated disease mechanisms and subtypes' at University College London |
| Year(s) Of Engagement Activity | 2019 |
| 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 | Parent and patient network meeting CLUSTER |
| 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 | The CLUSTER Consortium Champions (patient and parent representatives) attended a discussion with Professor Wedderburn, and Professor Adam Croft from the university of Birmingham about a new study (later set up as MAPJAG), aiming to obtain biopsies and synovial fluid from children with JIA. November 2020 |
| Year(s) Of Engagement Activity | 2020 |
| 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 | Poster Tour/Presentation - European League Against Rheumatism (EULAR)-PReS Conference June 2019 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Poster Tour and Presentation from CLUTER staff member Stephanie Shoop-Worral. Topic - Shoop-Worrall SJW, KL Hyrich, CAPS et al., 'Trajectories of Disease Activity over the First Three Years Following Juvenile Idiopathic Arthritis Diagnosis' EULAR-PReS joint conference, Madrid, Spain, June 2019. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Poster presentation by Bethany Jebson at 28th PReS Congress 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of poster at PReS Congress 2022. The title was: "ANA status is not associated with altered B cell distribution in the peripheral blood and synovial fluid of JIA patients." |
| Year(s) Of Engagement Activity | 2022 |
| Description | Poster presentation by Bethany Jebson at the Young Investigators Meeting 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of poster at Young Investigator Meeting (YIM) 2022 as part of a poster tour. The title was: "ANA status is not associated with altered B cell distribution in the peripheral blood and synovial fluid of JIA patients." Poster was chosen for the poster walk round during the main congress. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Poster presentation by Vicky Alexiou at the Young Investigators Meeting 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of poster at Young Investigator Meeting (YIM) 2022 as part of a poster tour. The title was: "The potential of CD161+ T cells as a surrogate measure of IL-17A expressing T cells in the synovial fluid of JIA patients" . |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation - European League Against Rheumatism (EULAR)-PReS Joint Conference June 2019 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | CLUSTER staff member Stephanie Shoop-Worall presentation at joint conference EULAR-PReS. Topic - Shoop-Worrall SJW, KL Hyrich, CAPS et al., 'Trajectories of Disease Activity over the First Three Years Following Juvenile Idiopathic Arthritis Diagnosis' European League Against Rheumatism (EULAR)-PReS YIM, Madrid, Spain, June 2019. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Presentation - Liverpool Early Career Researcher Conference: Data Science, Machine Learning and Artificial Intelligence, Liverpool, April 2019 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation given by CLUSTER staff Stephanie Shoop-Worall. Topic - Shoop-Worrall SJW, KL Hyrich, LR Wedderburn et al., 'Trajectories of Disease Activity over the First Three Years Following Juvenile Idiopathic Arthritis Diagnosis' Liverpool Early Career Researcher Conference: Data Science, Machine Learning and Artificial Intelligence, Liverpool, April 2019 |
| Year(s) Of Engagement Activity | 2019 |
| Description | Presentation - Statistical Analysis of Multi-Outcome Data Conference June 2019 (SAM 2019) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Oral presentation given by CLUSTER staff Stephanie Shoop-Worrall. Topic - Shoop-Worrall SJW, KL Hyrich, CAPS et al., 'Trajectories of Composite Scores Mask Heterogeneous Disease Patterns: Application in Juvenile Idiopathic Arthritis' Statistical Analysis of Multi-Outcome Conference (SAM), Manchester, June 2019. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Presentation - UCAN CABC April 2019 - Educational Program - Childhood Arthritis & Beyond - Clinical Trials in Uveitis |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation at UCAN CABC April 2019 by CLUSTER PI Prof A.V. Ramanan. Topic - Educational Program - Childhood Arthritis & Beyond - Clinical Trials in Uveitis |
| Year(s) Of Engagement Activity | 2019 |
| Description | Presentation at Diagnostics North East conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation on the use of AI and Machine learning for precision medicine in immune mediated inflammatory diseases |
| Year(s) Of Engagement Activity | 2021 |
| URL | http://newcastle.mic.nihr.ac.uk/diagnostics-north-east-conference-2021/ |
| Description | Presentation at SUMMIT workshop - Alder Hey Children's Hospital Liverpool May 2019 - "The EATC4Children and Alder Hey CRF as platforms for translational research". |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation by Jenna Gritzfeld, associate of CLUSTER Consortium and team member with CLUSTER PI Prof Michael Beresford, which presented and discussed the CLUSTER Consortium to an audience of academics and clinicians. Title of presentation : "The EATC4Children and Alder Hey CRF as platforms for translational research". Workshop - Identifying shared and unique molecular mechanisms in autoimmune/inflammatory conditions (SUMMIT): how molecular immune phenotyping will improve outcomes and wellbeing. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Presentation at The World Society of Paediatric Ophthalmology and Strabismus (WSPOS) 2020. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | The World Society of Paediatric Ophthalmology and Strabismus (WSPOS). Presentation by Andrew Dick entitled: Update in management of paediatric uveitis. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Presentation at the 2021 National Conference of Paediatric Rheumatology Society |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Professor A.V Ramanan presented "Management of Uveitis" |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation at the 26th European Paediatric Rheumatology Congress (September 2020) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Prof. Ramanan gave a talk entitled "Examining health outcomes in juvenile idiopathic arthritis- a genetic epidemiology study" at PReS in September 2020. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Presentation for University College London GOS Institute of Child Health Latent Group Meeting. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation by CLUSTER staff member Stephanie Shoop-Worrall, University of Manchester, given to Latent Group team meeting at UCL GOS Institute of Child Health. 16 September, 11:30 to 1pm (note the earlier time), room w1.06 at ICH (usual room): - Stevie Shoop-Worrall: Univariate and Multivariate Trajectories to Understand Disease Activity in Juvenile Idiopathic Arthritis - Alex Oldroyd: "Can longitudinal stratification in myositis aid clinical care and research?" |
| Year(s) Of Engagement Activity | 2019 |
| Description | Presentation of MRP8/14 Test Audit at the BSPAR (British Society for Paediatric and Adolescent Rheumatology) Research Day in Southampton |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Oral presentation by Emma J Jordan on the MRP8/14 test audit completed at Great Ormond Street, assessing the use of MRP8/14 in clinical practice as a predictor of disease flare following withdrawal of Methotrexate. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Presentation on Machine Learning and Artificial Intelligence for Stratified Medicine - At Alan Turing AI in Healthcare Strategy Event, Manchester, UK |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Presentation on challenges and opportunities of Machine Learning and AI in stratified medicine, including JIA |
| Year(s) Of Engagement Activity | 2019 |
| Description | Prof Ramanan Lecture at the National Uveitis Society of India September 2019 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Lecture on personalised medicine in uveitis for the National Uveitis Society of India, Bengaluru, India. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Rheumatology Grand Rounds, Hospital for Special Surgery, New York, NY: Invited Speaker |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | "Fast, sensitive, and accurate integration of single cell data to define cell-type specific immune disease mechanisms" Invited speaker Rheumatology Grand Rounds, Hospital for Special Surgery, New York, NY |
| Year(s) Of Engagement Activity | 2020 |
| Description | Saskia Lawson-Tovey at the British Society of 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 | Saskia Lawson-Tovey (CLUSTER data scientist) presented in the best oral abstract round. Her anstract was titled 'Successes and challenges in Harmonising 4 national Juvenile Idiopathic Arthritis Cohorts: an examples from CLUSTER Consortium' |
| Year(s) Of Engagement Activity | 2022 |
| Description | Saskia Lawson-Tovey at the British Society of Rheumatology Paediatric and Adolescent Rheumatology Conference 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | CLUSTER data harmonisation abstract has been accepted at BSR Paediatric and Adolescent Rheumatology Conference 2022, as both an oral presentation and a poster |
| Year(s) Of Engagement Activity | 2022 |
| Description | South East Network meeting (Rhescu) : COVID, vaccination for children and young people a Paediatric Rheum perspective. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk delivered at the South East Network meeting (Rhescu) on the topic of COVID, vaccination for children and young people a Paediatric Rheum perspective in September 2021. |
| Year(s) Of Engagement Activity | 2021 |
| Description | South East Network meeting (Rhescu) : Vaccination children and use of neutralising monoclonal Abs and anti-viral drugs for COVID infection in vulnerable groups |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Update delivered in the South East Network meeting (Rhescu) on the topic of Vaccination children and use of neutralising monoclonal Abs and anti-viral drugs for COVID infection in vulnerable groups. March 2022. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Speaker at 36th Frontier Scientists Workshop, Korean Academy of Science and Technology, Korea |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | "Using Genetics and Genomics to understand the basis of rheumatic disease" / Invited Speaker (Virtual talk during COVID-19 pandemic) 36th Frontier Scientists Workshop, Korean Academy of Science and Technology, Korea |
| Year(s) Of Engagement Activity | 2020 |
| Description | Speaker at CLUSTER Digital Seminar |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | "Using single-cell technologies to deconvolute large transcriptomic data sets or how can single cell technologies inform multi-omic AI / machine learning efforts to get a deeper understanding of disease biology" - Invited speaker Digital seminar, part of the CLUSTER Digital Seminar series |
| Year(s) Of Engagement Activity | 2020 |
| Description | Speaker at International Forum on Rheumatoid Arthritis (IFRA), Beijing, China |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | "Understanding the effects of HLA on autoimmune diseases and other complex traits" / Invited Speaker (Virtual talk during COVID-19 pandemic) International Forum on Rheumatoid Arthritis (IFRA), Beijing, China |
| Year(s) Of Engagement Activity | 2020 |
| 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 | Speaker: European League Against Rheumatism, Study Group for Risk Factors for RA, Frankfort, Germany |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | "Defining the key cell states in rheumatoid arthritis" / Invited Speaker (Virtual talk during COVID-19 pandemic) European League Against Rheumatism, Study Group for Risk Factors for RA, Frankfort, Germany |
| Year(s) Of Engagement Activity | 2020 |
| Description | Speaker: Nature Publishing Group, Genetics Community, London, United Kingdom |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | "Understanding the effects of HLA on autoimmune diseases and other complex traits" / Invited Speaker (Virtual talk during COVID-19 pandemic) Nature Publishing Group, Genetics Community, London, United Kingdom |
| Year(s) Of Engagement Activity | 2020 |
| Description | Stephanie Shoop-Worall - PReS 2020 E-Poster Presentation |
| 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-Worall Presenting P143 Methotrexate response subgroups identified in two UK juvenile idiopathic arthritis cohorts. E-Poster." |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.pres.eu/pres2020/ |
| Description | Stephanie Shoop-Worrall - PReS 2020 YIM Presentaation |
| 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-Worall Presenting P143 'Methotrexate Response Clusters Identified and Replicated Across Three UK Juvenile Idiopathic Arthritis Cohorts'. E-Poster. PReS YIM Session." |
| Year(s) Of Engagement Activity | 2020 |
| Description | Stephanie Shoop-Worrall Presentation at Online BSR 2020 - April 2020 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | SSW Presenting at the online BSR 2020 conference on April 2020. Presented "Methotrexate Response Clusters in Juvenile Idiopathic Arthritis". |
| Year(s) Of Engagement Activity | 2020 |
| Description | Stephanie Shoop-Worrall Presenting at online EULAR 2020 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | SSW presenting at the online EULAR 2020 in June. Presenting "Multiple Patterns of 'Response to Methotrexate Identified in a National Juvenile Idiopathic Arthritis Cohort". |
| Year(s) Of Engagement Activity | 2020 |
| 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 to Europe wide network of parents whose children have arthritis ENCA |
| 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 | The session was in two parts. A research update to parents about what has been happening and what the current focus is in Childhood Rheumatology research - JIA/JDM. The second half what was an interactive session led by L Wedderburn / E Robinson. During which questions around the importance and significance of stratified medicine testing was discussed. This led to an open discussion about what significance means to patients and their families and the clinicians. The group attending reported increased knowledge and interest in this area. As researchers we were able to note the groups responses to keep in mind when analyzing results and reporting back. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Talk to National Clinical Affairs and JIA TSG group on Eligibility for anti virals ( Iv or oral) for CYP with RMD and updates on COVID vaccination in Paed Rheumatology |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk to National Clinical Affairs and JIA TSG group on Eligibility for anti virals ( Iv or oral) for CYP with RMD and updates on COVID vaccination in Paed Rheum in February 2022. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Talk to National Clinical Affairs and JIA TSG group on COVID-19 vaccination in immunosuppressed children. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk to National Clinical Affairs and JIA TSG group on COVID-19 vaccination in immunosuppressed children in November 2021. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Talk to National Clinical Affairs and JIA TSG group: Update and discussion about COVID-19 vaccination in immunosuppressed children |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A presentation delivered by Lucy Wedderburn at the National Clinical Affairs and JIA TSG group: Update and discussion about COVID-19 vaccination in immunosuppressed children. July 2021. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Talk to Regional training day in paediatrics |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Lecture on stratified medicine in JIA. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Talk to charities, parents, patient groups at National BSPAR meeting Southampton |
| 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 | Interactive session led by L Wedderburn with charities parents etc. |
| Year(s) Of Engagement Activity | 2018 |
| 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 South East Network (Rhescu) for Paediatric Rheumatology meeting, title- Juvenile Idiopathic Arthritis: disease assessment in practice |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk by L. Wedderburn to the South East Network (Rhescu) for Paediatric Rheumatology meeting, title- Juvenile Idiopathic Arthritis: disease assessment in practice. July 2022 |
| Year(s) Of Engagement Activity | 2022 |
| Description | The Barbara Ansell Address : The past and future of pediatric rheumatology |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Prof Lucy Wedderburn delivered a talk in the Opening Ceremony of PReS: "The Barbara Ansell Address : The past and future of pediatric rheumatology ". September 2022 |
| Year(s) Of Engagement Activity | 2022 |
| 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 | The CLUSTER Consortium Newsletter |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | CLUSTER Consortium newsletter 2023 Issue sharing our progress and key achievements to date in an accessible way for a public audience as well as recent events and a 'spotlight' on one of our patient partners. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.clusterconsortium.org.uk/wp-content/uploads/2023/01/CLUSTER-newsletter-Jan-v2.1-2.pdf |
| Description | The annual Gerald Loewi Memorial Lecture at the International Rheumatology Conference, Israel 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Professor Wedderburn presented a talk titled 'Age matters: immune development and its impact across arthritis' at the 2022 annual Gerald Loewi Memorial Lecture at the International Rheumatology Conference, Israel. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Translational Research in Paediatric Rare Diseases Symposium, hosted by GOSH NIHR BRC |
| 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 | This symposium, hosted by Great Ormond Street Hospital's Biomedical Research Centre, aimed to bring together the national community of academic/researchers and other stakeholders to share experiences and discuss the unique challenges faced translating research into rare paediatric disorders into patient benefit. |
| Year(s) Of Engagement Activity | 2020 |
| Description | UCAN CABC Educational Program - Childhood Arthritis & Beyond - Novel Biomarkers 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 | The objective of the conference is to learn about recent discoveries in clinical and translational research in caring for patients with childhood arthritis and related pediatric rheumatic conditions, with the overall goal to improve long term outcomes. 101-500 individual reach for Lucy Wedderburn presentation entitled 'Novel Biomarkers in JIA'. Scientific Session 2 - Day 2 (24th April 2019) - Translational Research Talk - 20 minutes Q & A - 10 minutes |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://www.ucancandu.com/conferences/ |
| Description | UK IMID-BIO Consortium talk : The CLUSTER Consortium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | IMID Bio U.K is a network of clinicians, scientists, charity & industry partners working together to facilitate precision medicine in Immune-Mediated Inflammatory Disease (IMID). Virtual science meeting where Professor Wedderburn presented the CLUSTER Consortium June 2021 |
| Year(s) Of Engagement Activity | 2021 |
| 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 | 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 | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | CLUSTER PI Lucy Wedderburn attended event to celebrate women leading research in arthritis. Her Royal Highness The Duchess of Cornwall hosted a reception at Clarence House last night to celebrate the women who are leading the way in arthritis research. Event organised by Versus Arthritis, co-funder of the CLUSTER Consortium. Event also promoted on social media and website. Features link to Prof Wedderburn's research. https://www.versusarthritis.org/news/2020/february/celebrating-our-female-researchers/?utm_source=social&utm_medium=twitter&utm_campaign=women%20researchers |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.versusarthritis.org/news/2020/february/celebrating-our-female-researchers/?utm_source=so... |
| Description | Versus Arthritis Family Day May 2019 - Great Ormond Street Hospital. |
| 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 | Versus Arthritis hosted family day at Great Ormond Street Hospital on 11th May 2019. Fatjon Dekaj gave presentation to parents, patients, charity representatives and network representatives on the research ongoing at Great Ormond Street Hospital and about the CLUSTER Consortium. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Vicky Alexiou - UCL Versus Arthritis 6th Adolescent Rheumatology Symposium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | CLUSTER research assistant Vicky Alexiou presented 'Investigating the relative proportions and cytokine production of regulatory T-cells in juvenile idiopathic arthritis patients' |
| Year(s) Of Engagement Activity | 2022 |
| Description | Vicky Alexiou at BSI Annual Conference 2022 "CD161+ CD4 T cells at the inflammatory site have a distinct immunophenotype to peripheral CD161+ CD4 T cells of JIA patients" |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of poster at British Society for Immunology (BSI) Annual Conference 2022 as part of a poster tour by Research Assistant Miss Vicky Alexiou. The title was "CD161+ CD4 T cells at the inflammatory site have a distinct immunophenotype to peripheral CD161+ CD4 T cells of JIA patients". |
| Year(s) Of Engagement Activity | 2022 |
| Description | Wear Purple for JIA June 2019 - Bake Sale and GOSH Rheumatology Team Photo |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Social media campaign for #WearPurpleForJIA June 2019 - (https://www.jia.org.uk/wear-purple-for-jia-2019). Social media campaign by CLUSTER Consortium Research Coordinator and PPIE Lead along with GOSH Rheumatology staff and Rheumatology researchers at the Institute of Child Health. Photo taken with team to show unity for research in JIA and to support NRAS-JIA (CLUSTER chairty associate and stakeholder) campaign. Photo was uploaded on Twitter and reached a wide audience. Bake sale at the institute of child health which raised £89.55 for the #WearPrpleForJIA 2019 campaign. Campaign also raised awareness for CLUSTER, its stakeholders and charity associates and JIA research. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://www.jia.org.uk/wear-purple-for-jia-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/ |
| Description | YourRheum - CLUSTER Collaborative PPIE Workshop April 2019 |
| 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 | CLUSTER Staff member Stephanie Shoop-Worrall ran a focus group in collaboration with YourRheum members, which is a stakeholder and associate of CLUSTER, and YourRheum staff members Laura Lunt and Katherine Cresswell in Edinburgh. Presented CLUSTER work to the members. Largely to show them where we're at so far, get their input on whether the groups we've identified are meaningful and understand their experiences about the relationship between inflammation and wellbeing. |
| Year(s) Of Engagement Activity | 2019 |