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.
Diagnosed with DM, FSHD, or related diseases or are an unaffected family member of someone diagnosed with one of these diseases
None
Participants will volunteer to participate in this study. The study will be advertised through neuromuscular disease clinics, the National Registry website, Patient Advocacy Groups and MDA Clinics through out the United States.
Other
Prospective
Not listed
Patient reported outcomes
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University of Rochester
Lead sponsor
National Institute of Neurological Disorders and Stroke (NINDS)
Collaborator
