What is a Registry?

In this episode, you will learn what a registry is, the roles that registries play in research, and how patients and families can help support them. 

In the second episode of The CARRA Podcast, Claudette Johnson talks with Dr. Mary Beth Son, who is the Co-PI of the CARRA Registry. Dr. Son is Clinical Chief of the Division of Immunology and Section Chief of the Rheumatology Program at Boston Children's Hospital, as well as an Associate Professor of Pediatrics at Harvard Medical School. 

The Childhood Arthritis and Rheumatology Research Alliance (CARRA) has 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 has more than 14,000 patients enrolled at 70 sites. It also serves as a biosample repository for select translational studies that leverage registry data. 

The CARRA registry is a large registry, and it is used to study pediatric rheumatic disease. It has a lot of people participating and supporting it. At the moment, there are three main diseases that we collect data on, and that includes juvenile arthritis, lupus, and juvenile dermatomyositis. These are three of the more common diseases that we see in pediatric rheumatology clinics.

The real advantage of studying pediatric rheumatic disease in a registry is that these are rare diseases. We really want to be able to answer the kinds of questions that patients and their families have, but any one center has a very difficult time robustly answering questions about these diseases because they're rare. If you pool everybody in, then you're really able to study things and hopefully get to some meaningful answers for patients and their families.

Dr. Son also explains exactly how the registry works, what kind of information is collected and what the roles of patients and families are. She also explains the importance of biosamples in pediatric rheumatic disease research.

Claudette and Dr. Son tackle a wide variety of topics related to the registry, including AI and data privacy.

Learn more about the CARRA Registry and ongoing research using the registry and biorepositories.