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Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry

Research Question:
This is a registry to connect scientists with people with FSHD or DM.

Basic Study Information

Purpose:
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.

Location: University of Rochester Medical Center, Department of Neurology

Lead Researcher (Principal Investigator)

Lead Researcher: Al-rabi Tawil

Study Contact Information

Study Coordinator: Registry Coordinator
Phone: (888) 925-4302
Email: dystrophy_registry@urmc.rochester.edu

Additional Study Details

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