- ICH GCP
- US Clinical Trials Registry
- Clinical Trial NCT00082108
Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry
National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members
Study Overview
Status
Detailed Description
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:
- A Patient Information Form, which asks about your muscle strength, general health, and how your disease affects your daily life
- A Medical Records Release Form, which allows us to contact your doctor and obtain records about your diagnosis
- An informed Consent Form, which describes the study's purpose and what you can expect while you are involved with the project.
After you are enrolled in the Registry, there are several ways to participate in research. The activities include:
- Complete an annual update form to help us keep track of how your symptoms change over time.
- Receive updates about the progress of the Registry, research highlights, and other news related to muscular dystrophy through newsletters, an email listserv, and Facebook.
- Receive letters from the Registry when researchers are looking for patients to take part in studies. These projects may include filling out questionnaires, exploring new treatments, and other types of research.
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.
Study Type
Enrollment (Estimated)
Contacts and Locations
Study Contact
- Name: Registry Coordinator
- Phone Number: 888-925-4302
- Email: dystrophy_registry@urmc.rochester.edu
Study Locations
-
-
New York
-
Rochester, New York, United States, 14642
- Recruiting
- University of Rochester Medical Center, Department of Neurology
-
Contact:
- Registry Coordinator
- Phone Number: 888-925-4302
- Email: dystrophy_registry@urmc.rochester.edu
-
Principal Investigator:
- Richard T. Moxley, III, MD
-
Sub-Investigator:
- Rabi Tawil, MD
-
Sub-Investigator:
- Charles Thornton, MD
-
-
Participation Criteria
Eligibility Criteria
Ages Eligible for Study
- Child
- Adult
- Older Adult
Accepts Healthy Volunteers
Sampling Method
Study Population
Description
Inclusion Criteria:
- Diagnosed with DM, FSHD, or related diseases or are an unaffected family member of someone diagnosed with one of these diseases
Exclusion Criteria:
- No family history of DM, FSHD, or related diseases
Study Plan
How is the study designed?
Design Details
- Observational Models: Other
- Time Perspectives: Prospective
What is the study measuring?
Primary Outcome Measures
Outcome Measure |
Time Frame |
---|---|
Patient reported outcomes
Time Frame: Annual
|
Annual
|
Collaborators and Investigators
Sponsor
Investigators
- Principal Investigator: Richard T. Moxley, III, MD, University of Rochester Medical Center, Department of Neurology
Publications and helpful links
Study record dates
Study Major Dates
Study Start
Primary Completion (Estimated)
Study Completion (Estimated)
Study Registration Dates
First Submitted
First Submitted That Met QC Criteria
First Posted (Estimated)
Study Record Updates
Last Update Posted (Actual)
Last Update Submitted That Met QC Criteria
Last Verified
More Information
Terms related to this study
Keywords
Additional Relevant MeSH Terms
- Nervous System Diseases
- Genetic Diseases, Inborn
- Musculoskeletal Diseases
- Muscular Diseases
- Neuromuscular Diseases
- Neurodegenerative Diseases
- Muscular Disorders, Atrophic
- Heredodegenerative Disorders, Nervous System
- Muscular Dystrophies
- Myotonic Dystrophy
- Muscular Dystrophy, Facioscapulohumeral
- Myotonic Disorders
Other Study ID Numbers
- NIAMS-104
- U54NS048843 (U.S. NIH Grant/Contract)
This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.
Clinical Trials on Muscular Dystrophy
-
Avidity Biosciences, Inc.RecruitingPhase 1/2 Study of AOC 1020 in Adults With Facioscapulohumeral Muscular Dystrophy (FSHD) (FORTITUDE)Muscular Dystrophies | Muscular Dystrophy, Facioscapulohumeral | FSHD | Facio-Scapulo-Humeral Dystrophy | FMD | Facioscapulohumeral Muscular Dystrophy 1 | FSHD2 | FSHD1 | FMD2 | Fascioscapulohumeral Muscular Dystrophy | Fascioscapulohumeral Muscular Dystrophy Type 1 | Fascioscapulohumeral Muscular Dystrophy... and other conditionsUnited States, United Kingdom, Canada
-
Wyeth is now a wholly owned subsidiary of PfizerCompletedBecker Muscular Dystrophy | Facioscapulohumeral Muscular Dystrophy | Limb-Girdle Muscular DystrophyUnited States
-
Massachusetts General HospitalUniversity of Pittsburgh; Boston Children's Hospital; Brigham and Women's Hospital and other collaboratorsRecruitingDuchenne Muscular Dystrophy | Becker Muscular Dystrophy | Myotonic Dystrophy | Facioscapulohumeral Muscular DystrophyUnited States
-
University of North Carolina, Chapel HillNational Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and other collaboratorsCompletedMuscular Dystrophies | Duchenne Muscular Dystrophy | Becker Muscular Dystrophy | Limb-Girdle Muscular DystrophyUnited States
-
Boston Children's HospitalNational Institute of Neurological Disorders and Stroke (NINDS)RecruitingLimb-girdle Muscular Dystrophy | Neuromuscular; Disorder, Hereditary | Duchenne/Becker Muscular DystrophyUnited States
-
Laurent ServaisSYSNAVRecruitingDuchenne Muscular Dystrophy | Fascioscapulohumeral Muscular DystrophyBelgium
-
Virginia Commonwealth UniversityEdgewise Therapeutics, Inc.RecruitingMuscular Dystrophies | Becker Muscular Dystrophy | Muscular Dystrophy in Children | Muscular Dystrophy, BeckerUnited States, United Kingdom
-
Massachusetts General HospitalCompletedDuchenne Muscular Dystrophy | Dystrophinopathy | Becker's Muscular DystrophyUnited States
-
Rigshospitalet, DenmarkCompletedBecker Muscular Dystrophy | Limb-Girdle Muscular Dystrophy Type 2IDenmark
-
University Hospital of North NorwayUniversity of Tromso; Norwegian Muscle Disease Association (FFM); Norwegian National... and other collaboratorsActive, not recruitingMuscular Dystrophies | Limb Girdle Muscular Dystrophy | Limb Girdle Muscular Dystrophy, Type 2I | Limb Girdle Muscular Dystrophy R9 FKRP-relatedNorway