Research Study Alert: Survey for Individuals with DMD — The Duchenne Muscular Dystrophy Health Index (DMD-HI)

Researchers at University of Rochester are seeking individuals living with Duchenne muscular dystrophy (DMD) to participate in a survey to help with development and validation of a disease-specific, patient-reported outcome measure for clinical trials involving people with DMD.

Participants will need to complete an online survey and a follow-up phone interview. The survey will take approximately 20 minutes and will ask some personal questions about you, your household, and how the disease affects your quality of life physically, mentally, and emotionally. The interview will take approximately 60 minutes and will discuss how easy it was to complete the survey, how understandable the questions were, the format of the survey, and what some of the questions meant to you.

To be eligible, individuals must meet the following criteria:

  • Person with DMD ages 11 years and older

Interested participants can reach out to the study coordinator, Jennifer Weinstein, at 585-419-5335 or email Any questions or comments can be directed to the study coordinator.