Join the National Registry for Myotonic Dystrophy
You can help advance research in myotonic dystrophy by joining the national registry for myotonic dystrophy. Sign up today!
In 2000 the National Registry for Myotonic Dystrophy (DM) and Facioscapilohumeral Muscular Dystrophy (FSHD) was developed at the University of Rochester in Rochester, New York with funding from the National Institutes of Health (NIH). It was developed to facilitate research by making available to investigators anonymous data on Registry members, by helping investigators recruit subjects into their clinical studies, and by providing educational materials to patients and family members. By participating in research, patients can assist in finding answers to questions related to causes and symptoms of the disease in order to develop better treatments - and hopefully, one day, a cure for DM (and FSHD).
If you join the Registry, you will be able to decide whether or not you want to participate in each study, unless it is one collecting anonymous data, in which case your record on file - with your name deleted - will be shared with the researcher.
In other studies, the Registry will send you a letter asking if you are interested in participating in research on a particular topic. If you choose to participate, and only then, will your name be given to the researcher who will then contact you. There will be various types of research projects: some asking you to fill out a questionnaire, to donate blood or tissue samples, to grant permission to test your muscles or to try new treatments.
Before any research begins, an investigator must submit to the Registry’s advisory committee a brief application and summary of the protocol for the research project. Only with the committee’s approval will the investigator proceed with the process of gathering information from members of the Registry.
The Registry grows more valuable to researchers the larger it becomes. There are different forms to fill out for children and adults.
The Registry is also seeking unaffected relatives of people living with DM to participate in control groups.
Investigators, click here for application to use the Registry.
Phone: (888)925-4302 Email: dystrophy_registry@urmc.rochester.edu