The CMDIR is the largest global collection of data about affected individuals with congenital through late onset muscle disorders, with over 3,000 registrants from 82 countries. We are the only self-reported registry covering the 35 subtypes and 120+ genes that cause CMD.
Our goal is to advance research toward treatments for all disorders we register. In registering this large cohort of affected individuals, the research community can learn from you and apply your experiences to their work. Academic clinicians and researchers operating under an IRB-approved protocol will be able to access de-identified, aggregate data from the registry for free. Our goal is to make the data collected in the CMDIR as widely available as possible to have the greatest impact on progress toward improving diagnostics, care, and treatments.
Affected individuals and families may also learn from others in the registry. You will be able to compare your survey answers to other registrants and see how much you have in common with others in our global community.