There are many different ways to get involved so everyone can participate no matter their stage of disease or ability to travel. Please explore all the possibilities below to see if there is something you could participate in.
The results of this study will provide us with a better understanding of the clinical aspects of dysferlinopathy and identify the best outcome measures to test the efficacy of potential therapies in future clinical trials.
TREAT NMD LGMD Standards of Care Survey
Status: This survey is active
Finally, clinical efforts are being made to improve the standards of care for individuals with all forms of LGMD. It has taken years to build clinical interest to a level where official surveys for the LGMDs are being requested. In order to make sure the standards of care that are being developed for LGMD subtypes address the specific needs of the dysferlinopathy community we need individuals with dysferlinopathy to participate in this survey.
Spending a nominal amount of time doing this will yield significant return, paving the way for more effective clinical care offered to individuals with all types of LGMD.
The survey is available in multiple languages and more translations are in the works. Click here to find links to all the currently available translations.