DM1 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.
For more information see www.urmc.rochester.edu/nihregistry/.
Registry of Arrhythmias in DM1
The Registry of Arrhythmias was launched in 1996 and contains records of 406 genetically confirmed DM1 patients who have been followed for an average of seven years. The goals of the registry are to determine the natural history and risk factors for cardiac issues in DM1 in the context of the underlying disease, to develop cardiac referral guidelines, and to study interventions for arrhythmias.