CARRA’s primary focus is to facilitate and accelerate research in pediatric rheumatic diseases that is driven by academicians, clinicians and patients/families. Our mission is to conduct collaborative research to find treatments and a cure.
Why CARRA Exists
CARRA was founded in 2002 by a small group of pediatric rheumatologists whose collective vision was to create an investigator-led collaborative research network in the US and Canada with an elected leadership. CARRA recognized that meaningful research in rare pediatric rheumatic diseases must be done through collaboration among many pediatric rheumatologists and many centers, large and small. CARRA has emulated the model of other successful pediatric research networks such as the Children’s Oncology Group to change the culture of research so that all patients with a rheumatic disease will be able to participate and contribute to research and in finding a cure.
CARRA’s Research So Far
Since CARRA’s inception, we have published hundreds of articles, had 16 annual meetings (now with almost 500 participants including more than 50 patients/parents and almost 60 workgroups), and launched major studies, including:
- The CARRA Registry
- Phase IV studies to assess the safety of medicines for JIA (currently canakinumab in systemic JIA and tocilizumab in polyarticular JIA)
- CARRA Consensus Treatment Plans (CTP) pilot studies in systemic JIA, lupus nephritis, juvenile dermatomyositis and localized scleroderma)
- STOP-JIA: A comparative effectiveness study of polyarticular JIA CTPs
- FROST: A comparative effectiveness study of systemic JIA CTPs
- PROMOTE: Study assessing predictors of methotrexate response in polyarticular JIA
- Precision Decisions to STOP JIA: Finding a biomarker blood test tool to be able to predict response to treatment in polyarticular JIA
- AnaStills clinical trial of anakinra for systemic JIA
- New PCORI grant
Our coordinating center for almost all of these studies (including the CARRA Registry) is the Duke Clinical Research Institute (DCRI), which is located in Durham, NC.
We have an important partnership with the Arthritis Foundation that has allowed us to initiate important programs including:
- CARRA-Arthritis Foundation Intramural Grant Programs
- CARRA-Arthritis Foundation coordinator pilot support program for registry sites
- AF-funded project led by The Dartmouth Institute to develop clinically useful electronic dashboards to allow patients and clinicians to co-produce care and make treatment decisions
- PCORI funded development of a learning health system within the PARTNERS Patient Powered Research Network
Patient Engagement in CARRA Research
CARRA believes that patients who are affected by pediatric rheumatic diseases and their families should help us lead research efforts in these areas. That means being part of the research team, including helping to define the questions that need to be answered, designing research studies and protocols, developing patient/public facing materials, translating medical articles to make them understandable to patients and families, among other activities.
Impact of CARRA’s Research
Through our research, CARRA will be able to answer many important questions that are critically important to patients and clinicians alike, such as:
- What is the long-term safety of medications used to treat children?
- When should biologics be started in children with JIA (both polyarticular and systemic)
- How well do children with rheumatic diseases do as adults?
- Are there blood or genetic markers that can predict a patient’s response (or non-response) to medication?
- How can we know which medicine is the right one to start?
- When is it safe to stop a treatment that is working well?
- How can we prevent the complications of pediatric rheumatic diseases?
- How can we facilitate the development and availability of new and innovative treatments for our patients?