Research Studies

Through the Registry, patients with myotonic dystrophy and FSHD are given the opportunity to participate in several research studies. These clinical studies are aimed at improving quality of life and preparing for treatment trials. Members of the Registry have helped researchers better understand cancer in DM patients, pregnancy outcomes in FSHD patients, pain, and burdens of disease.

Click the links to the left to read more about current and past research studies through the Registry!

All studies have been approved by the Registry's Scientific Advisory Committee, which includes scientists and researchers from all over the United States and Canada, who were instrumental to develop the design and forms of the Registry and who provide ongoing oversight of its operations.

Contact Us

Registry Coordinators:
Jim Hilbert and Liz Luebbe

Toll free: (888) 925-4302
Email us

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