Research & Registry

The CARRA Registry

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 4/24/20): 10,411

Research

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.

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 is the optimal time to start biologics in children with different categories of JIA?
• How do children with rheumatic diseases fare 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 in a particular patient?
• When is it safe to stop a treatment that seems to be working well?
• How can we prevent complications of pediatric rheumatic diseases?
• How can we facilitate the development and availability of new and innovative treatments for our patients?