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Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry

University of Rochester · with National Institute of Neurological Disorders and Stroke (NINDS) · NCT00082108

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Opens the official ClinicalTrials.gov record, with the study team’s contacts. Bored Studies doesn’t enroll anyone.

Key facts

Compensation
Not posted. Ask the study team before screening.
Who can join
Any age listed · All sexes
Healthy volunteers
Accepted
Study type
Observational
Target enrollment
3000
US sites recruiting
1
Study start
September 2000
Record last updated
October 15, 2025

Status re-checked against ClinicalTrials.gov within the last 12 hours.

What the study is about

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.

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

Eligibility criteria

Copied from the official record. The study team makes the final decision at screening.

Show full criteria

Inclusion Criteria

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

Recruiting US locations

  • University of Rochester Medical Center, Department of Neurology

    Rochester, NY 14642

    Site contact: Registry Coordinator · 888-925-4302 · dystrophy_registry@urmc.rochester.edu

Study contacts (from the official record)

  • Registry Coordinator · 888-925-4302 · dystrophy_registry@urmc.rochester.edu
All healthy volunteers studies in New York →
Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry (NCT00082108) | Bored Studies