Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry

Part of paid clinical trials in Rochester, New York.

Sponsor
University of Rochester
Study ID
NCT00082108
Status
Recruiting
Apply to this trial

Conditions

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

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Accepted

Study Details

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 Dates

Start date
Sep 30, 2000
Status verified
Oct 2025
Primary completion
Jun 30, 2028
Completion
Jun 30, 2028

Study Design

Enrollment
3,000 participants (estimated)

Primary Outcome Measure

Patient reported outcomes [ Time Frame: Annual ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
University of Rochester Medical Center, Department of NeurologyRochesterNew York14642
Registry Coordinator
[email protected]
888-925-4302
Richard T. Moxley, III, MD (PRINCIPAL_INVESTIGATOR)
Rabi Tawil, MD (SUB_INVESTIGATOR)
Charles Thornton, MD (SUB_INVESTIGATOR)

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By research site
University of Rochester Medical Center, Department of Neurology· Rochester, NY

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