Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry
Launched by UNIVERSITY OF ROCHESTER · Apr 29, 2004
Trial Information
Current as of June 26, 2025
Recruiting
Keywords
ClinConnect Summary
The Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry is a research project aimed at understanding two inherited muscle disorders: myotonic dystrophy (DM) and facioscapulohumeral muscular dystrophy (FSHD). These conditions can cause progressive weakness and loss of muscle function. This registry serves as a way to connect individuals diagnosed with DM or FSHD, as well as their family members, with researchers who are studying these diseases. By participating, you can help scientists learn more about these conditions and their impact, which may lead to better treatments in the future.
To take part in this registry, you need to have a diagnosis of DM, FSHD, or a related condition, or be an unaffected family member of someone with these diseases. Unfortunately, if you don’t have a family history of these conditions, you wouldn’t be eligible. Participants can expect to share information about their health and experiences, which will be valuable for ongoing research. This is a chance to contribute to important studies that could help improve the lives of those affected by these muscular dystrophies.
Gender
ALL
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
About University Of Rochester
The University of Rochester is a leading academic institution dedicated to advancing medical research and improving patient care through innovative clinical trials. Renowned for its commitment to excellence in education, research, and clinical practice, the university fosters a collaborative environment that integrates cutting-edge scientific inquiry with practical applications in healthcare. With a focus on diverse therapeutic areas, the University of Rochester aims to enhance treatment options and outcomes for patients while contributing to the broader scientific community through rigorous study design and ethical standards in clinical research.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Rochester, New York, United States
Patients applied
Trial Officials
Johann Hamel, MD
Principal Investigator
University of Rochester Medical Center, Department of Neurology
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported
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