Rheumatic Diseases: Observational Study of Pediatric Rheumatic Diseases - The CARRA Registry
Condition or Therapy:
Pediatric rheumatology diseases include juvenile arthritis, systemic lupus erythematosus, scleroderma and juvenile dermatomyositis.
What is the goal of this study?
The Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry is an international registry of children and young adults with pediatric-onset rheumatic conditions such as juvenile idiopathic arthritis (JIA). The CARRA Registry is generating valuable data on the epidemiology, disease outcomes and medication safety among children with diverse pediatric rheumatologist diseases. The Registry also intends to follow each participant for at least 10 years to help understand disease outcomes and how they may change over time. Some participants are also eligible for participation in sub-studies, which address more specific questions, and for biospecimen collection, to better understand the biology of these diseases. The CARRA Registry 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.
Who can join the study?
This study is a good fit for children and families who are interested in participating in research and learning more about their disease. Please ask your pediatric rheumatologist for more details about eligibility.
What will happen if my child takes part in this study?
If you choose to participate in the study, you will meet with a research coordinator who will discuss the study further with you and obtain consent for participation (and assent from your child if they are old enough). They will ask you and/or your child to complete some additional questions about how they are feeling, including level of pain and overall well-being. The research coordinator will provide you with questionnaires at some of your child's regular clinic visits, approximately every 6 months. Your child's doctor will complete some forms at the same visit that include information about what medications your child is taking and how their disease is doing.
There are no extra visits required for participation in this study and participation does not impact your child's care. This is an observational study, meaning data are collected from the doctor and from the patient about how they are doing, but no intervention is provided.