Patients & Families


Juvenile Dermatomyositis (JDM) is uncommon and affects about 3 in 1 million children each year. Without treatment, prior to the 1960’s, outcomes are very poor for children with JDM. Thankfully with treatment, outcomes have improved, but we still have a lot of room for improvement. Big research studies and drug trials have been almost impossible to do, due to the rarity of JDM, so there are no FDA approved treatments for JDM.  Through CARRA and its members, using the CARRA Registry and Biorepository, we are hopeful that we may be able to overcome the prior barriers to learning about JDM.  There are many research questions that need to be answered:

  • Which medicines are best for the different types of JDM?
  • How do we treat calcinosis in JDM?
  • How do we measure skin disease in JDM? 
  • How do we measure and account for patient/family’s perspective of JDM disease and its treatment?
  • How are JDM patients doing as adults?

Through research, CARRA seeks to learn the answers to these and many other questions.  Doctors and families need these answers to be able to decide which is the best medicine for a disease.

In addition to being able to the right treatment for each patient, CARRA researchers seek to discover new and better treatments, and eventually a cure. 

There is also a tool created by our partners the Arthritis Foundation which will help you find research projects being done all over the world.