Registry for Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy
National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members
This study is creating a registry for people with myotonic dystrophy or facioscapulohumeral muscular dystrophy to share their health information and connect with researchers working to learn more about these conditions.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 3000 (estimated) |
| Sex | All |
| Sponsor | University of Rochester Academic / other |
| Locations | 1 site (Rochester, New York) |
| Trial ID | NCT00082108 on ClinicalTrials.gov |
What this trial studies
This registry connects individuals diagnosed with myotonic dystrophy (DM) or facioscapulohumeral muscular dystrophy (FSHD) with researchers focused on these conditions. Participants can provide information about their health and symptoms, which will help scientists understand these diseases better. The registry also facilitates communication between patients and researchers, allowing for participation in various research activities and studies related to muscular dystrophy. It is sponsored by the National Institutes of Health and aims to promote research on these rare disorders.
Who should consider this trial
Good fit: Ideal candidates include individuals diagnosed with DM, FSHD, or related muscular dystrophies, as well as unaffected family members.
Not a fit: Patients who do not have a diagnosis of DM, FSHD, or related conditions may not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could enhance research efforts and lead to improved treatments for patients with myotonic dystrophy and FSHD.
How similar studies have performed: Other registries and observational studies have shown success in connecting patients with researchers and advancing understanding of rare diseases.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Diagnosed with DM, FSHD, or related diseases or are an unaffected family member of someone diagnosed with one of these diseases
Where this trial is running
Rochester, New York
- University of Rochester Medical Center, Department of Neurology — Rochester, New York, United States (Recruiting)
Study contacts
- Principal investigator: Johann Hamel, MD — University of Rochester Medical Center, Department of Neurology
- Study coordinator: Registry Coordinator
- Email: dystrophy_registry@urmc.rochester.edu
- Phone: 888-925-4302
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.