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.

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.

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.

Organisations

Publications

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publication icon
Ding W (2019) Big data and stratified medicine: what does it mean for children? in Archives of Disease in Childhood

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Geifman N (2018) Patient Stratification Using Longitudinal Data - Application of Latent Class Mixed Models. in Studies in health technology and informatics

 
Title CLUSTER Consortium Website 
Description Artistic public website developed for the CLUSTER Consortium to present information about the consortium to the public. 
Type Of Art Artefact (including digital) 
Year Produced 2019 
Impact Provide information to general public, patients, families, researchers, industry and clinicians regarding the CLUSTER Consortium. Provide channel to contact the consortium leads. Provide channel to join mailing list for future events, workshops, focus groups and joining patient and parent network. 
 
Description Arthritis Research UK Centre of Excellence funding
Amount £2,000,000 (GBP)
Organisation Versus Arthritis 
Start 08/2018 
End 07/2023
 
Title CLUSTER Consortium TranSMART Data Platform 
Description The CLUSTER Consortium will collate data from CHARMS, CAPS, BSPAR-Etanercept study, BCRD studies, SYCAMORE, and APTITUDE. The platform will allow for data handling, data collection, data sharing, data analysis and computer modelling to enable greater power in analyses and research. 
Type Of Material Database/Collection of data 
Year Produced 2018 
Provided To Others? No  
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. 
 
Description Adalimumab in Juvenile Idiopathic Arthritis-associated Uveitis Stopping Trial (ADJUST) 
Organisation Alder Hey Children's 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 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
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
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 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 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 Unknown 
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 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 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
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 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 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 Unknown 
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 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 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 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 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 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 Public 
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
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 Public 
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 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 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 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 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
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 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 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 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 Unknown 
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 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 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 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 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 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
 
Description CLUSTER Consortium Website 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact CLUSTER Consortium website developed to introduce the consortium to the public, and provide information on the project.
Contact page and about us page developed to provide contact details of Co-investigators on the project. Contact us for direct access to consortium management and PPIE officers.
Events page to show events, focus groups and meetings for public. Publications released under the consortium will be present.
Mailing list developed and integrated into website for research, industry, public and patients.
Year(s) Of Engagement Activity 2019
 
Description CLUSTER PPIE engagement 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact As part of the application process for CLUSTER we ran multiple Parent and patient engagement sessions across 2017. This included work with charity Oliva's Vision to send out a questionnaire for parent feedback to over 100 parents of children with uveitis. This will be used for a scientific paper. Other engagement sessions brought together focus groups of parents and patients affected by JIA to help discuss future research and the direction they want to see this go. This resulted in formation of the successful CLUSTER grant and the appointment of a parent lead and patient lead who are integral to the running of CLUSTER.
Year(s) Of Engagement Activity 2017
 
Description CLUSTER patient group 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact A parent and patient group was held in Oct 2017 to discuss the outputs from CHART and work towards the development of the CLUSTER application which was relevant and well understood by the patients affected. This created a good discussion and ideas which were added into the successful CLUSTER application.
Year(s) Of Engagement Activity 2017
 
Description Cambridge UK: Mini Symposium - Paediatric Rheumatology 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Cambridge UK: Mini Symposium - Paediatric Rheumatology talk title: Stratified medicine in juvenile arthritis: getting the right medicines to the right kids.
Year(s) Of Engagement Activity 2018
 
Description 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 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 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 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 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 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 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 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 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 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 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/