We are excited to share with you a survey containing questions to help researchers better understand the impact of FSHD on patients and caregivers. The survey was developed collaboratively by Acceleron Pharma, aTyr Pharma, the FSH Society, and Jeffrey Statland, MD PhD. Topics include the use of assistive devices, exercise, specific muscle weaknesses, and willingness to participate in various types of clinical trials among others. These responses will be used to help advance the field and inform the design of clinical studies for new therapies.
Upon close, the survey data will be compiled and analyzed for insights. The results will then be summarized into a publication which will be shared by the FSH Society for all to read. The survey should take approximately 15 minutes. This is an exciting opportunity to have your voice heard and make a difference in the FSHD community! Thank you for taking the time to help.