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 (https://www.carragroup.org).
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)