Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy RegistryResearch Question:
This is a registry to connect scientists with people with FSHD or DM.
Basic Study Information
Purpose:Location: University of Rochester Medical Center, Department of Neurology
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.
Lead Researcher (Principal Investigator)
Lead Researcher: Al-rabi Tawil
Study Contact InformationStudy Coordinator: Registry Coordinator
Phone: (888) 925-4302
Additional Study Details
Trial Not Found
The study you are looking for is not active at this time.
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