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National Registry for Myotonic Dystrophy (DM) and Facioscapulohumeral Muscular Dystrophy (FSHD)

Research Question:
The purpose of the study is to study information on how DM and FSHD affect people and to connect patients with researchers.

Basic Study Information

Myotonic dystrophy (DM) and facioscapulohumeral muscular dystrophy (FSHD) are inherited disorders characterized by progressive muscle weakness and loss of muscle tissue. The goals of this Registry are to: 1. Help researchers collect and study information on how DM and FSHD affect people; 2. Help researchers recruit patients with DM and FSHD into clinical studies and trials; 3. Share information about opportunities and advances in DM and FSHD research with you, care providers, and researchers.

Location: University of Rochester Medical Center, Department of Neurology
Study Reference #: 00000010

Lead Researcher (Principal Investigator)

Lead Researcher:  Al-rabi Tawil

Study Contact Information

Study Coordinator: Registry Coordinator
Phone: (888) 925-4302

Additional Study Details

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