Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry
|The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.|
|ClinicalTrials.gov Identifier: NCT00082108|
Recruitment Status : Recruiting
First Posted : April 30, 2004
Last Update Posted : January 4, 2022
|Condition or disease|
|Myotonic Dystrophy Facioscapulohumeral Muscular Dystrophy Muscular Dystrophy Myotonic Dystrophy Type 1 Myotonic Dystrophy Type 2 Congenital Myotonic Dystrophy PROMM (Proximal Myotonic Myopathy) Steinert's Disease Myotonic Muscular Dystrophy|
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 :||Observational|
|Estimated Enrollment :||3000 participants|
|Official Title:||National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members|
|Study Start Date :||September 2000|
|Estimated Primary Completion Date :||June 2023|
|Estimated Study Completion Date :||June 2023|
- Patient reported outcomes [ Time Frame: Annual ]
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT00082108
|Contact: Registry Coordinatorfirstname.lastname@example.org|
|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 email@example.com|
|Principal Investigator: Richard T. Moxley, III, MD|
|Sub-Investigator: Rabi Tawil, MD|
|Sub-Investigator: Charles Thornton, MD|
|Principal Investigator:||Richard T. Moxley, III, MD||University of Rochester Medical Center, Department of Neurology|