April 21st, 2022
An important study between FSHD Europe and the John Walton Muscular Dystrophy Research Centre (JWMDRC) at Newcastle University has launched this week.
There is a growing interest from several pharma companies to run clinical trials in FSHD in Europe. FSHD Europe is working with the Pharmaceutical Industry to ensure that when trials are developed, they are designed and organized in a way to maximize the involvement and participation of people living with FSHD. In order to achieve this, FSHD Europe are conducting a large-scale survey of people living with FSHD and caregivers across Europe.
FSHD Europe are providing funding to the JWMDRC to develop, manage and analyse this survey. The survey will include questions about the person’s condition and how they currently manage it. It will also include some questions to gain insight into the FSHD community’s thoughts and opinions on clinical trials, and what might encourage them to participate.
We hope this will be far reaching in the FSHD community across Europe and are keen for as many people living with FSHD and caregivers to be given the opportunity to participate as possible. There are no right or wrong answers, we are looking for your opinions.
The survey will be available to complete online from the 15th of April until 2nd May 2022. FSHD Europe are committed to sharing the information they learn from the survey with the FSHD community.