The CARRA Registry and Biorepository play a critical role in advancing CARRA’s mission to conduct collaborative research to prevent, treat, and cure pediatric rheumatic diseases.
The CARRA Registry is the largest ongoing, observational registry in North America that collects clinical and patient-reported information about children and young adults with pediatric-onset rheumatic diseases. The CARRA Registry also serves as a biosample repository for select translational studies that leverage data collected through the Registry.
The goal of the CARRA Registry is to understand the long-term outcomes and the long- and short-term safety and effectiveness of the medications used to treat pediatric rheumatic diseases. We aim to make it possible for all affected children and families to have the opportunity to participate in meaningful and high-quality clinical and translational research.
Registry Participants Enrolled
Active Registry Sites across North America and Israel
Clinical Visits Recorded
Biosamples Associated with Clinical Registry Data
CARRA Legacy Registry
The CARRA Registry is currently in its second phase since relaunching in 2015. The former registry, referred to as the CARRA Legacy Registry, was established in 2009 through funding from the National Institutes of Health.
The Legacy Registry successfully demonstrated the capabilities and interest of the pediatric rheumatology sites within the CARRA network to enroll and collect longitudinal data on large numbers of participants with pediatric rheumatic diseases. Data collection procedures limited the types of analyses possible through the Legacy Registry, which provided a strong rationale for establishing the new CARRA Registry in 2015.
Several pivotal sub-studies were conducted through the CARRA Legacy Registry, including:
The Biorepository was established in 2017 with the vision to collect high-quality biosamples across the CARRA Registry network. By pairing biosamples with Registry data, researchers can learn a lot about patients, their biology, and biomarkers related to their diseases. Currently, samples are only collected for specific sub-studies in the Registry. All samples are collected using standard processes and collection kits, which allow them to be compared across the Registry network.
Types of samples include:
Using CARRA Registry Data and Biosamples for Research
The CARRA Registry intends to collect data for 10 years on each participant. Biosample collection varies per sub-study, but often includes collection at several time points associated with Registry visits. The CARRA Registry is in full compliance with regulatory standards for use and maintenance of electronic records and is the foundation for data collection for many different CARRA research studies, including:
- Observational studies,
- Comparative effectiveness research,
- Randomized and non-randomized clinical trials, and
- Biomarker and other translational studies.
With a network of 74 active academic sites across the United States, Canada and Israel, the Registry provides a unique opportunity to learn more about the epidemiology, outcomes, etiology, and biology of different pediatric rheumatic diseases, including juvenile idiopathic arthritis (JIA), lupus and related conditions, juvenile dermatomyositis (JDM), and scleroderma.
As a benefit of CARRA membership, members can request access to CARRA Registry data or samples on a rolling basis through the Data and Sample Share Committee. CARRA has a process for researchers, which is detailed in our Member Portal.
Biopharmaceutical, biotechnology or other external organizations interested in exploring collaborative opportunities using CARRA Registry data should submit an inquiry through our Contact page for further consideration.
Registry and Biorepository Research Projects
Since the organization was founded, CARRA has focused on medication-specific and disease-specific research projects. Learn more about Registry-related sub-studies and trials.
Inquiries to Become a New CARRA Registry Site
CARRA is not currently accepting requests for new CARRA Registry sites.
For questions about the CARRA Registry, please contact [email protected].