Health Research

National Registry of Myotonic Dystrophy (DM) and Facioscapulohumeral Muscular Dystrophy (FSHD)

Basic Study Information

The goals of the National Registry are to connect patients with researchers and to study the symptoms and progression of DM and FSHD.
Patients join the Registry to find out about research studies they can participate in and to contribute to knowledge about DM and FSHD. The National Registry has helped advance research since September 2000. Patients in the Registry provide yearly updates on their symptoms and learn about research studies they can participate in. The information in the Registry may help speed up the development of new treatments and prepare for clinical trials. It also provides a means to assess current patterns of treatment and compare this information to recommended standards of care. It is free to join the National Registry. The National Registry is funded by the National Institutes of Health Paul D. Wellstone Muscular Dystrophy Cooperative Research Center at the University of Rochester. The Registry is led by Dr. Richard T. Moxley, III and other researchers at the University of Rochester.
University of Rochester Medical Center

Lead Researcher (Principal Investigator)

Richard Moxley, MD

Study Contact Information

James Hilbert or Elizabeth Luebbe
(888) 925-4302

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Additional Study Information

If you or a family member has myotonic dystrophy or FSHD, please join the National Registry to receive study notifications and research updates.

Learn More About These Conditions

More information about Muscular Dystrophy
More information about Muscular Dystrophy