Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry

Recruiting now

Conditions studied: 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

In brief

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.

Key facts

Study ID

NCT00082108

Run by

University of Rochester

People needed

3000

Starts

2000-09-01

Expected to finish

2028-06-01

Last updated by the study team

2025-10-15

Who can join

Age: any. Sex: any. Healthy volunteers: accepted.

You may qualify if…

• Diagnosed with DM, FSHD, or related diseases or are an unaffected family member of someone diagnosed with one of these diseases

Where it is running

• University of Rochester Medical Center, Department of Neurology — Rochester, New York, United States (enrolling)

Full record on ClinicalTrials.gov

Trial information comes from ClinicalTrials.gov and is refreshed daily. TrialsForMe does not provide medical care and does not run the studies it lists.