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RECRUITING

NCT00082108

Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry

Sponsor: University of Rochester

View on ClinicalTrials.gov

Summary

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.

Official title: National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members

Key Details

Gender

All

Age Range

Any - Any

Study Type

OBSERVATIONAL

Enrollment

3000

Start Date

2000-09

Completion Date

2028-06

Last Updated

2025-10-15

Healthy Volunteers

Yes

Conditions

Myotonic Dystrophy Facioscapulohumeral Muscular Dystrophy Muscular Dystrophy Myotonic Dystrophy Type 1 Myotonic Dystrophy Type 2 Congenital Myotonic Dystrophy PROMM (Proximal Myotonic Myopathy)Steinert's Disease Myotonic Muscular Dystrophy

Locations (1)

University of Rochester Medical Center, Department of Neurology

Rochester, New York, United States