FSHD University – FSHD Experiences: Insights from Europe

1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT

Our speaker is Megan McNiff, a research associate from the John Walton Muscular Dystrophy Research Centre, Newcastle University, UK. She will be presenting the results from the FSHD European Patient Survey. The survey received over 1,000 responses from 26 countries within Europe. The results from this survey should provide researchers and industry with areas of research that will be meaningful to patients.

There is a growing interest from several pharma companies to run clinical trials in FSHD across Europe. This study aimed to understand the FSHD community’s perspective, so that when clinical trials are developed, they are designed and organized in a way to maximize patient involvement.