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Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry
National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members
Who can join
All ages · All sexes · Healthy volunteers welcome
Full eligibility criteria
Inclusion Criteria: * Diagnosed with DM, FSHD, or related diseases or are an unaffected family member of someone diagnosed with one of these diseases
About the study
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.
Sponsor: University of Rochester · Participants: 3,000 · Started: 2000-09
Contact the study team
- Registry Coordinator · Phone: 888-925-4302
Official record on ClinicalTrials.gov — NCT00082108
Locations in the U.S.
| New York | University of Rochester Medical Center, Department of Neurology, Rochester |
Conditions
From ClinicalTrials.gov, data retrieved Oct 3, 2026. Each study sets its own eligibility; the study team decides who can join.