About the National Registry

The Registry's main goals are to advance research and knowledge of myotonic dystrophy (DM) and facioscapulohumeral muscular dystrophy (FSHD).

To meet these goals, the Registry enrolls individuals throughout the United States who have DM or FSHD and who are interested in hearing about research updates and studies that they may be eligible to participate in. Enrollment in the Registry is free, and you can withdraw at any time.

Researchers can use the Registry for assistance with recruiting patients into clinical studies. These studies may involve receiving drugs (if eligible), having muscle strength tested and other procedures (e.g. blood drawn) at medical centers across the country, or completing questionnaires at home. Examples of questionnaires include asking you for information about your symptoms or quality of life.

Once enrolled, you'll:

  • Be notified by mail about new studies in DM and FSHD. You can then contact the study team if you're interested in participating. All studies are voluntary, and the Registry will not release your name to any study teams. The Registry's Scientific Advisory Committee reviews all studies for safety and scientific merit;
  • Receive newsletters from the Registry about current studies, recent accomplishments, and updates in DM and FSHD;
  • Be given the opportunity to tell us about your symptoms every year through a questionnaire. This information will help us better understand the various symptoms of DM and FSHD and their progression over time.

Contact Us

Registry Coordinators:
Jim Hilbert and Liz Luebbe

Toll free: (888) 925-4302
Email us

Help us make a difference!

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