What information is being collected?
Visits will take places 4 times over 2 years (baseline, 6 months, 12 months, and 24 months). For most participants each visit should last no more than 1 day.
A combination of medical, physiotherapy, questionnaires, and laboratory test will be performed on each participant according to their level of ability. For some patients and some sites, additional testing may be performed and could include cardiac testing, MRI, and gait analysis. As was done in COS, for those that choose, blood and a skin biopsy will be taken to provide DNA, RNA, plasma, serum, and fibroblasts for biobanking. These samples will be used by researchers in future research on dysferlinopathy.
Note: the asterisk sign below means assessment done at limited number of site and/or on selected patients.