CARRA seeks to facilitate, accelerate and perform research that is driven by academicians, clinicians, and patients and families to understand the epidemiology, outcomes, etiology and biology of pediatric rheumatic diseases. Our MISSION is to conduct collaborative research to prevent, treat, and cure pediatric rheumatic diseases.
The CARRA Registry is an observational registry that collects clinical and patient reported information about patients with pediatric-onset rheumatic diseases. It provides opportunities for research through identification of subjects eligible for future studies and by serving as a data repository. The Registry is a cornerstone of CARRA’s research and provides disease and treatment data on children with a variety of rheumatic diseases. Through the Registry, CARRA aims to make it possible for all affected children in North America to have the opportunity to participate in meaningful and high quality clinical and translational research.
The goal of the CARRA Registry is understand the long-term outcomes, as well as the long- and short-term safety and effectiveness of the medications used to treat pediatric rheumatic diseases. We aim to enroll at least 10,000 participants, and to follow them for 10 or more years.
Enrollment (as of 1/10/20): 10,057
The CARRA Registry is the foundation for data collection for many different CARRA research studies, including observational, pharmacosurveillance, comparative effectiveness, randomized and non-randomized clinical trials, and biomarker and other translational studies. Since CARRA’s inception, we have focused on medication-specific and disease-specific research projects. Some examples include: the Phase IV studies assess the safety of medicines for JIA (currently canakinumab in systemic JIA and tocilizumab in polyarticular JIA; STOP-JIA and FROST, which are comparative effectiveness studies of polyarticular and systemic JIA Consensus Treatment Plans (CTPs) respectively; and PROMOTE, which is studying assessing predictors of methotrexate response in JIA. Please see a complete list of CARRA research projects here.
The clinical research coordinating center for almost all of these studies (including the CARRA Registry) is the Duke Clinical Research Institute (DCRI), which is located in Durham, North Carolina. In addition, the informatics and data warehousing coordinating center for the CARRA Registry is the Registry Informatics Research and Development Group within the Computational Health Informatics Program (CHIP) at Boston Children's Hospital.
We have an important partnership with the Arthritis Foundation that has allowed us to fund internal research grant programs, training of early investigators, and a pilot coordinator support program for registry sites.
Through our research, CARRA will be able to answer many important questions that are critically important to patients and clinicians alike, such as:
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Yukiko Kimura, MD
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Laura Schanberg, MD
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Timothy Beukelman, MD, MSCE
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Marc Natter, MD
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