National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members
Status: Recruiting
Location: See location...
Study Type: Observational
SUMMARY
Myotonic dystrophy (DM) and facioscapulohumeral muscular dystrophy (FSHD) are inherited disorders characterized by progressive muscle weakness and loss of muscle tissue. The purpose of this registry is to connect people with DM or FSHD with researchers studying these diseases. The registry will offer individuals with DM and FSHD an opportunity to participate in research that focuses of their diseases. The registry will also help scientists to accomplish research on DM and FSHD and to distribute their findings to patients and care providers.
Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: t
View:
• Diagnosed with DM, FSHD, or related diseases or are an unaffected family member of someone diagnosed with one of these diseases
Locations
United States
New York
University of Rochester Medical Center, Department of Neurology
RECRUITING
Rochester
Contact Information
Primary
Registry Coordinator
dystrophy_registry@urmc.rochester.edu
888-925-4302
Time Frame
Start Date: 2000-09
Estimated Completion Date: 2028-06
Participants
Target number of participants: 3000
Authors
Richard T. Moxley
Related Therapeutic Areas
Sponsors
Leads: University of Rochester
Collaborators: National Institute of Neurological Disorders and Stroke (NINDS)