Thank you for your interest in the International Dysferlinopathy Registry. The registry has been moved to a new platform allowing users the choice to engage with other users and edit/view their details. The new Dysferlin Registry platform allows for researchers to utilize data studies by querying the participants and is the framework to build a trial ready community. Clinicians can now request access to enter their genetically confirmed patients directly into the registry as well. If you would like more information about joining the Dysferlin Registry or to inquire about placement, please send an email to

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.