Join the effort to improve care for kids with rheumatic diseases
Conditions like JIA, lupus, dermatomyositis, and scleroderma raise many questions. The CARRA Registry helps researchers find answers that support kids like yours.
Why your participation matters
The CARRA Registry is the largest study of children and young adults with pediatric-onset rheumatic diseases in North America.
By sharing information about how these conditions develop and how kids respond to treatment, families help researchers improve care, guide safer therapies, and shape knowledge that will benefit children for generations.
Who is eligible to participate?
The Registry welcomes children and adolescents with pediatric-onset rheumatic diseases, including (but not limited to):
Juvenile Idiopathic Arthritis (JIA)
Pediatric Lupus (Systemic Lupus Erythematosus)
Juvenile Dermatomyositis
Childhood Scleroderma
Other similar conditions diagnosed in childhood
Children with disease onset before age 16–19 may join, with no extra clinic visits required. Enrollment simply allows researchers to use routine visit information and brief questionnaires, with consent from you and assent from older children.
Data privacy & safety
The Registry collects information from your child’s routine clinic visits and brief questionnaires about their health and daily experiences. All data are stored securely and de-identified so personal details are removed before analysis.
Only approved researchers can access the information for scientific purposes. Participation is voluntary, and you may withdraw your child at any time without affecting their care.
How families benefit
Community & Support
You & your child become part of a community of peers and families working toward improved care
Impact on Future Treatments
You help ensure children like yours, now and in the future, have access to better-informed treatment options.
Meaningful Contribution
You gain the knowledge that you’re contributing to advancing research—your story matters.
Ongoing Updates
You may receive updates (in lay-friendly language) about what has been learned from the Registry, what’s next, and how your child’s experience helps.
How to enroll to CARRA
1
Tap the button below to create an account.
2
Complete the short enrollment form (takes ~5 minutes).
3
You’ll receive confirmation and instructions for next steps.
4
At your child’s next routine clinic visit, data collection begins—but no extra visits or procedures required.
5
Every ~6 months (or as outlined) you’re invited to update questionnaires, and your child’s doctor completes a short data-check in.
About the study team
Embleema is a health technology company that helps bring together all kinds of health information—clinical records, genetic data, wearables, and surveys—so researchers can better understand conditions and improve care. Developed with the FDA, Embleema’s platform keeps data secure and private while giving families and patient communities a meaningful way to participate in research.
The CARRA Registry is North America’s largest study of children and young adults with pediatric-onset rheumatic diseases. It collects clinical information and patient- or parent-reported data—sometimes with optional biosamples—to help researchers understand how these conditions develop and how treatments work. With over 13,500 participants across 74 sites, the Registry supports research that improves care now and for future generations.