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UR Medicine / Neurology / National Registry for Myotonic Dystrophy & Facioscapulohumeral Dystrophy

National Registry for Myotonic Dystrophy (DM) & Facioscapulohumeral Dystrophy (FSHD)

Help Us Advance Research

The National Registry advances research in myotonic dystrophy (DM) and FSHD by helping patients to participate in clinical studies. These studies help doctors, investigators, and care providers better understand the biology, progression, and other important issues in DM and FSHD.

Help Us Learn What's Important to You and Your Family


Registry members complete questionnaires every year about their symptoms. We collect and track your clinical information which can lead to a better understanding of DM and FSHD, how symptoms change over time, and how to improve care for patients.

Help Us Create a Team for DM and FSHD

The Registry promotes sharing of information about DM and FSHD between care providers, researchers, and patients. This teamwork allows all key players to learn from each other, discuss which symptoms are most important, and strive for improvements in clinical care and therapeutic treatments.

The Registry has been funded by the National Institutes of Health (NIH) from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (contracts #N01-AR-5-2274 and #NO1-AR-0-2250), and the National Institute of Neurological Disorders and Stroke through the Senator Paul D. Wellstone Muscular Dystrophy Cooperate Research Centers (grant #U54-NS048843).