Presented by Johanna Hamel, MD, and Kate Eichinger, DPT, from the University of Rochester Medical School.
When doctors diagnose individuals with a progressive condition like FSH muscular dystrophy (FSHD), they’re often asked, What does the future look like? Will I need to use an orthotic brace? How long do I have before I need to use a walker or a wheelchair? What about respiratory support?
While medical professionals can provide some general guidance, the truth is that we need more research to better predict how an individual might progress. That is the primary goal of a new study, Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD). Its aims are to create a standard, clinic-based protocol – techniques to assess patients’ health and muscle strength and function in the doctor’s office – which will help to improve care and hasten the development of treatments for FSHD. The MOVE study is now enrolling volunteers at the 12 sites of the FSHD Clinical Trial Research Network. Join our webinar to learn more about why this study is important and what’s involved for volunteers.