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
Purpose:
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
Email: dystrophy_registry@urmc.rochester.edu
Additional Study Details
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