FSHD registry – United States of America
The National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy
This registry, which is funded by the US National Institutes of Health and based at the University of Rochester, has the primary goal of facilitating research in DM and FSHD by establishing a mechanism for contact between researchers and patients. Secondary goals include collection of self-reported data from patients, education of patients and care providers, and promoting a sense of community and involvement in the research process.
Patients can sign up for this registry by downloading an application pack or contacting the registry office.