The International Dysferlinopathy Registry is currently undergoing restructuration.
Registration and requests may be delayed until mid-september and we apologize for the related delays.
Welcome to the International Dysferlinopathy Registry
The International Dysferlinopathy Registry provides an opportunity for patients with LGMD2B, Miyoshi Myopathy and other clinical presentations of dysferlinopathies to participate in research studies or clinical trials and obtain the best possible care.
This free registry is open to all patients worldwide with identified genetic defects (mutations) in the dysferlin gene.
Information on this website is provided for potential participants, their doctors and research scientists.
NOTE: Some of this website has been translated into German (de), Spanish (es), Catalan (ca), Italian (it), French (fr), and Japanese (日本語). To access these pages please click on the appropriate language link in the top right-hand corner of the page. To translate the other pages, we have added a Google translate tool. To use this tool just select your desired language from the “Select Language” menu in the top right-hand corner of the page.
|•||Learn more about Dysferlinopathies and the Clinical Outcome Study for Dysferlinopathies.|
|•||Learn more about the International Dysferlinopathy Registry, its governance and funding, and about data protection and protection of the participant rights.|
|•||Find out if you are eligible for the International Dysferlinopathy Registry.|
|•||Start the registration process.|
If you have already registered, log into your account to view your details and to update them as necessary.
If you have any questions about the Registry, please feel free to contact us.