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Sponsors and Collaborators: |
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) National Institute of Neurological Disorders and Stroke (NINDS) |
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Information provided by: | National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) |
ClinicalTrials.gov Identifier: | NCT00082108 |
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.
Condition |
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Myotonic Dystrophy Muscular Dystrophy, Facioscapulohumeral Muscular Dystrophy |
Study Type: | Observational |
Study Design: | Prospective |
Official Title: | National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members |
Estimated Enrollment: | 2300 |
Study Start Date: | September 2000 |
Estimated Study Completion Date: | September 2010 |
The National Registry of DM and FSHD Patients and Family Members was developed to create a link between patients and scientists in order to promote research on these rare illnesses. The Registry is sponsored by the National Institutes of Health.
Patients that are interested in joining the Registry can email or call to request an application or download the forms from the website (www.dystrophyregistry.org). The Application packet contains:
After you are enrolled in the Registry, there are several ways to participate in research. The activities include:
There is no obligation to participate in these activities. Taking part in any study or filling out the annual updates are completely up to you.
Genders Eligible for Study: | Both |
Accepts Healthy Volunteers: | Yes |
Sampling Method: | Non-Probability Sample |
Participants will volunteer to participate in this study. The study will be advertised through neuromuscular disease clinics, the National Registry website, Patient Advocacy Groups and MDA Clinics through out the United States.
Inclusion Criteria:
Contact: Registry Coordinator | 888-925-4302 | dystrophy_registry@urmc.rochester.edu |
United States, New York | |
University of Rochester Medical Center, Department of Neurology | Recruiting |
Rochester, New York, United States, 14642 | |
Contact: Registry Coordinator 888-925-4302 dystrophy_registry@urmc.rochester.edu | |
Principal Investigator: Richard T. Moxley, III, MD | |
Sub-Investigator: Rabi Tawil, MD |
Principal Investigator: | Richard T. Moxley, III, MD | University of Rochester Medical Center, Department of Neurology |
Responsible Party: | University of Rochester ( Dr. Richard T. Moxley, III, MD ) |
Study ID Numbers: | NIAMS-104, NO1-AR-0-2250 |
Study First Received: | April 29, 2004 |
Last Updated: | September 3, 2008 |
ClinicalTrials.gov Identifier: | NCT00082108 |
Health Authority: | United States: Federal Government |
Registry FSHD Muscular Dystrophy Facioscapulohumeral Myotonic Dystrophy |
Dystrophia myotonica 1 Myotonic Disorders Neurodegenerative Diseases Muscular Dystrophy, Facioscapulohumeral Myotonia atrophica Muscular Dystrophies Muscular Diseases Heredodegenerative Disorders, Nervous System Muscular Disorders, Atrophic |
Musculoskeletal Diseases Neuromuscular Diseases Genetic Diseases, Inborn Myotonic Dystrophy Facioscapulohumeral muscular dystrophy 1a Atrophy Muscular dystrophy Landouzy-Dejerine muscular dystrophy |
Nervous System Diseases |