Actively Recruiting
Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry
Led by University of Rochester · Updated on 2025-10-15
3000
Participants Needed
1
Research Sites
1447 weeks
Total Duration
On this page
Sponsors
U
University of Rochester
Lead Sponsor
N
National Institute of Neurological Disorders and Stroke (NINDS)
Collaborating Sponsor
AI-Summary
What this Trial 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
Official Title
Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Diagnosed with DM, FSHD, or related diseases or are an unaffected family member of someone diagnosed with one of these diseases
You will not qualify if you...
History of severe allergic reactions to study medication Currently pregnant or breastfeeding Recent participation in another clinical trial within the last 30 days Presence of uncontrolled medical conditions that could affect safety
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
University of Rochester Medical Center, Department of Neurology
Rochester, New York, United States, 14642
Actively Recruiting
Research Team
R
Registry Coordinator
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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