Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry

Recruiting Observational Study
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
Healthy Volunteers Welcome You do not need to have the condition being studied to take part. No Study Drug Researchers observe your health over time — no experimental treatment is given.
Ready to participate?

Review the details below, then apply to join this clinical trial.

At a Glance
Sex
Any
Study type
Observational
Participants needed
3,000 (estimated)
Sponsor
University of Rochester · Other
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About This Trial
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 disea…
Trial Locations
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Eligibility Criteria
Inclusion Criteria: * Diagnosed with DM, FSHD, or related diseases or are an unaffected family member of someone diagnosed with one of these diseases
Contacts

Registry Coordinator

888-925-4302

dystrophy_registry@urmc.rochester.edu

CONTACT