We would like to work to improve the care of children with Juvenile Myositis/JM (Juvenile Dermatomyositis and Polymyositis).
Unfortunately, there are no formalized measures of quality of care in JM. Together with members of organizations like CureJM and CARRA (Childhood Arthritis & Rheumatology Research Alliance), we have the power to develop measures of quality that are important to patients and families with JM, but also useful for clinicians who care for these patients and families.
The first series of questions are for baseline assessment of the type/extent of JM, followed by questions regarding specific measures which we ask you to rate in terms of importance.
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 CureJM, possible future publication and application for funding to expand this work.