About the survey
FSHD Europe performed a survey to find out what FSHD patients and their caregivers want from future clinical trials and what would encourage them to participate. This information will be used by FSHD Europe and pharmaceutical companies to ensure that when trials are developed, they are designed and organised in a way to maximise patient involvement and participation. The survey was performed in 2022 and in total 1147 people participated.
FSHD patients across Europe defined which symptoms they consider most important to be targeted first by a new therapy. The top 3 was:
31% Stopping the progression of the disease
18% Regaining strength
12% Reduction in fatigue; increased energy and endurance
All the results are published in a lay report and scientific article.