DM1 & 2 registry – United States of America
The Myotonic Dystrophy Family Registry
The Myotonic Dystrophy Family Registry is a web-based registry created specifically for individuals with myotonic dystrophy (DM1 and DM2). MDFR is unique in that it will not only help researchers find new, effective treatments and identify possible participants for upcoming clinical trials and research studies, but will also allow anyone who is registered to have access to the collected data (de-identified only), from academic and pharmaceutical researchers to individuals or families living with DM.
The goal is to give all DM stakeholders, including family members, a better understanding of the disease, the DM community, and current research and advocacy efforts. To register, head to www.myotonicregistry.org or, for more information, email the Registry Coordinator at firstname.lastname@example.org.