Research Study Alert: People With DMD Invited to Participate in a Survey About Symptoms

Researchers at the University of Rochester in New York seek people diagnosed with Duchenne muscular dystrophy (DMD) who are interested in helping to develop disease-specific patient-reported outcome measures for future clinical trials. This survey will help to determine the most critical symptoms of children, young adults, and adults with DMD, and as a result, it will allow researchers to measure small but clinically significant therapeutic gains during future clinical trials.

Interested participants, please access the survey HERE. The link will open an information letter in REDCap detailing the purpose, risks, and benefits of the research and will be followed by a REDcap survey. Potential subjects have the option to complete or discontinue the survey anonymously. The survey will take approximately 15-20 minutes to complete.


Participants must be 11 years or older, English speaking, and diagnosed with DMD based on a report from their physician or the MDA DMD registry. No travel is required as the survey is online.

To learn more and to inquire about participation, contact Jennifer Weinstein at or at (585) 419-5335.