Juvenile Dermatomyositis in the CARRA Registry & Biorepository
Disease Area:
Juvenile Dermatomyositis (JDM)
Biosample Status:
Biosample Available
About the Juvenile Myositis Cohort
Juvenile Myositis (JM), including Juvenile Dermatomyositis (JDM) and Juvenile Polymyositis (JPM), is a group of rare and life-threatening autoimmune diseases, in which the body’s immune system attacks its own cells and tissues. Weak muscles and skin rash are the primary symptoms of JDM, while muscle weakness without a rash is the primary symptom of JPM.
Even within these designations, JM affects every child differently. Some children experience a mild form of the disease, while others follow a more severe and potentially more debilitating course. In partnership with the CureJM Foundation, CARRA collects disease information and biosamples on children and young adults with JDM and JPM through the CARRA Registry.
Researchers want to learn:
- More about disease features in children with JDM and JPM, using information from clinic visits and biosamples
- How the disease changes over time
- How well children with JDM and JPM do on their treatments
By collecting information and biosamples on children with JDM and JPM at regular CARRA-related clinic visits, researchers can perform many different kinds of research studies to better understand and predict which children will reach full remission, which is when their disease is not active, or may need personalized treatments that will work best for their biology. Having a lot of information available through the Registry makes research easier since JDM is so rare.
Study Updates and Findings
- Over 100 JDM/JPM patients were enrolled in the CARRA Registry within the first year of the JDM study starting in 2019.
- Earlier time to diagnosis and milder disease was common.
- More than half of the patients were being treated with CARRA Consensus Treatment Plans (CTPs), or standard sets of treatment options. This means future research comparing treatment plans may be possible.
- Read more from the latest 2021 ACR abstract: Baseline Characteristics and Patient Reported Outcomes from a Juvenile Dermatomyositis Registry Inception Cohort
About the Participants
- Children with JDM or JPM. Children or young adults with an official diagnosis within the past 6 months by a qualified pediatric rheumatologist, dermatologist, or neurologist could be enrolled in the Registry.
- Children diagnosed up to the age of 19. Children must be under the age of 19 at the time of diagnosis.
- No more than 12 weeks of systemic medications. Children just starting new medications or who have had systemic treatments for less than 12 weeks are able to participate.
- New Registry participants can contribute blood samples. JDM/JPM participants joining the Registry can voluntarily provide blood samples at the time of joining and at their next 6-month CARRA-related visit.
About the Study Team
This program is sponsored by the CureJM Foundation. CARRA works closely with the current Juvenile Dermatomyositis Research Committee on efforts to advance JDM research in the CARRA Registry and Biorepository.
To learn more about this project, please contact [email protected].