Benefits of registering

Participating in the International Dysferlinopathy Registry will provide the following benefits for you:

The more patient information collected, the better equipped researchers will be for finding therapies for this disease.
You will receive information relevant to you or your condition – for example you will be notified if researchers find better ways of caring for patients with a dysferlinopathy.
You will be informed if you might be a suitable candidate for certain clinical trials or research studies.
The data collected will reveal how many people worldwide have the same condition and provide relevant information to researchers interested in the best standards of care for your disorder.
Anonymous information gleaned from the analysis of the Registry data will be published on this website.