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 National Registry of DM and FSHD Patients and Family Members was started to help people with DM and FSHD participate in research on their diseases, to help scientists accomplish research on DM or FSHD, and to encourage more research on these diseases.

People wishing to join this registry complete a consent form, sign an Authorization for Release of Medical Information, and fill out a multi-page Patient Information Form asking for information about their medical and educational/vocational histories and functional abilities. Medical records will be collected from potential participants' physicians. People meeting the diagnostic criteria for inclusion will be added to the registry and are then eligible for research studies that use the registry to recruit participants. There are no study visits associated with membership in the registry. Members of the registry will be contacted annually by mail to update the details of their last Patient Information Form.

Genders Eligible for Study:  Both

Accepts Healthy Volunteers

Criteria

• Diagnosed with DM, FSHD, or related diseases or are an unaffected family member of someone diagnosed with one of these diseases