National Registry for Myotonic Dystrophy and FSHD

Established over 25 years ago, the Registry continues to help advance research for myotonic dystrophy type 1 and type 2 (DM1 and DM2) and facioscapulohumeral muscular dystrophy (FSHD). The goals of the National Registry are to collect data on how the symptoms of DM and FSHD affect people in their daily lives and recruit people into studies. Please contact us to learn more!

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).