National Registry for Myotonic Dystrophy (DM) and Facioscapulohumeral Muscular Dystrophy
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
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 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.
Study Reference #: 00000010
Lead Researcher (Principal Investigator)
Study Contact InformationStudy Coordinator: Registry Coordinator
Phone: (888) 925-4302
Additional Study Details
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