Registry for Patients and Family Members with Myotonic Dystrophy or Facioscapulohumeral Muscular Dystrophy to Support Research

What this Trial Is About

Researchers are connecting people with myotonic dystrophy DM or facioscapulohumeral muscular dystrophy FSHD, both inherited disorders causing progressive muscle weakness, with scientists studying these diseases. This registry aims to support research and share findings with patients and healthcare providers. Sponsored by the National Institutes of Health, the registry fosters participation and collaboration for these rare muscular dystrophies. To join, individuals can request or download an application containing a Patient Information Form about muscle strength and daily life impact, a Medical Records Release Form for diagnosis verification, and an informed Consent Form explaining the study. Once enrolled, participants can engage in research activities such as completing annual updates on symptom changes and receiving study invitations for questionnaires or treatment explorations. Participation in these activities is voluntary. During the study, researchers collect patient-reported outcomes annually to track disease progression. Participants receive updates on research progress and news through newsletters, emails, and social media. The registry facilitates ongoing communication between patients and researchers without requiring mandatory involvement in further studies. The program has been running since 2000 and will continue through June 2028, with participation duration varying by individual.

Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry