National Registry for Myotonic Dystrophy and Facioscapulohumeral Dystrophy

URL: external link

The University of Rochester Wellstone Center maintains a registry of more than 2,100 patients with myotonic dystrophy and patients with facioscapulohumeral muscular dystrophy. Researchers can apply to the Registry’s Scientific Advisory Committee to access deidentified data or to obtain assistance with patient recruitment.