The Childhood Arthritis and Rheumatology Research Alliance (CARRA) is a North American organization almost 400 pediatric rheumatologists &  researchers who are working together to find better ways to treat pediatric rheumatologic conditions (

As you know, there are no “proven” treatments for JDM due to the rarity of the condition, as well as the difficulty funding large clinical trials.  CARRA has developed ‘Consensus Treatment Plans’  for Moderate JDM which is currently in its pilot phase (see links below).  Our intent is to allow clinicians to choose the treatment plan that is similar to their usual practice. By doing so, variation will be reduced, and large numbers of children will be treated similarly.  This will allow for prospective data collection and application of newer statistical methods (eg: comparative effectiveness, propensity scoring)  to help determine the most effective therapy.

Similarly, we would like to try to develop ‘Consensus Treatment Plans’ for "amyopathic" JDM.  To develop representative treatment plans for "amyopathic" JDM, in addition to the Rheumatology CARRA community, we need to engage the Pediatric Dermatology Community and are hoping to collaborate with the SPD.  Sheilagh Maguiness (Pediatric Dermatology of SPD) has helped to coordinate this effort.

This survey will help us understand the degree of overlap in the evaluation and treatment approaches for children with JDM between CARRA and SPD, and will be the first step to determine if a future collaboration with the CARRA JDM group and SPD could be successful.

This is an IRB approved survey. Proceeding with this web-based survey will imply your consent to participate in this study, and participants will remain anonymous. If this work is fruitful, our intention would be continued collaboration with SPD and possible publication in the future.

Thank you in advance for your help with this rare condition!
Susan Kim (Pediatric Rheumatology)

* 1. How long have you been practicing pediatric dermatology?

* 2. In what setting do you practice pediatric dermatology?

* 3. Please estimate how many patients with juvenile dermatomyositis you have seen in the past 5 years:

* 4. Please estimate how many patients with juvenile dermatomyositis  you actively follow?

* 5. Please estimate how many patients with Amyopathic juvenile dermatomyositis have you seen in the past 5 years?

* 6. Please estimate how many patients with Amyopathic  juvenile dermatomyositis you actively follow?

* 7. In your opinion, how often do patients with Amyopathic juvenile dermatomyositis ultimately develop muscle disease?

* 8. Do you screen for muscle disease?

* 9. If you screen for muscle weakness, how do you screen for muscle weakness (choose all those that apply)?

  Not applicable Never Initially All viisits
Ask the patient/parent if they are weak?
Perform formal strength testing for muscle weakness?
Perform laboratory testing?

* 10. If you perform lab testing, which muscle enzymes do you check, if any (check all those that apply)?

* 11. Which additional testing do you perform?

  Not Applicable Never Sometimes Always
Skin biopsy
Muscle biopsy

* 12. How often do you perform skin biopsies to confirm juvenile dermatomyositis?

* 13. How often do you refer patients with juvenile dermatomyositis to a pediatric rheumatologist?

* 14. If you do not refer patients with juvenile dermatomyositis to a pediatric rheumatologist, why not (choose all that apply)? 

* 15. How often do you refer patients with Amyopathic juvenile dermatomyositis to a pediatric rheumatologist?

* 16. In addition to sunscreen/protection, please rank the topical therapies you would use for dermatomyositis:

  1 2 3 4 5
Low potency steroids
Mid potency steroids
High potency steroids
Calineurin inhibitors

* 17. Are there any guidelines you follow regarding topical therapy?

* 18. When would you consider the addition of a systemic agent for Amyopathic dermatomyositis (check all those that apply)? 

* 19. What systemic therapies do you use/would you use, for your patients with juvenile dermatomyositis?

* 20. Do you think that better treatment and understanding of Amyopathic JDM is important?

* 21. Would you be interested in collaborating to work to better treat and understand Amyopathic JDM in the future?

* 22. Do you have any other comments, questions, or concerns?