NCT00082108 Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry
| NCT ID | NCT00082108 |
| Status | Recruiting |
| Phase | — |
| Sponsor | University of Rochester |
| Condition | Myotonic Dystrophy |
| Study Type | OBSERVATIONAL |
| Enrollment | 3,000 participants |
| Start Date | 2000-09 |
| Primary Completion | 2028-06 |
Eligibility & Interventions
Eligibility Fast-Check
Enter your details for a quick preliminary check. This does not replace medical advice.
What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 3,000 participants in total. It began in 2000-09 with a primary completion date of 2028-06.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief Summary
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.
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
Contact & Investigator
Johann Hamel, MD
PRINCIPAL INVESTIGATOR
University of Rochester Medical Center, Department of Neurology
Frequently Asked Questions
Who can join the NCT00082108 clinical trial?
This trial is open to participants of all sexes, studying Myotonic Dystrophy. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT00082108 currently recruiting?
Yes, NCT00082108 is actively recruiting participants. Contact the research team at dystrophy_registry@urmc.rochester.edu for enrollment information.
Where is the NCT00082108 trial being conducted?
This trial is being conducted at Rochester, United States.
Who is sponsoring the NCT00082108 clinical trial?
NCT00082108 is sponsored by University of Rochester. The principal investigator is Johann Hamel, MD at University of Rochester Medical Center, Department of Neurology. The trial plans to enroll 3,000 participants.