With growing interest from several pharmaceutical companies around clinical trials for FSHD, FSHD Europe is funding the John Walton Muscular Dystrophy Research Centre to create, conduct and analyse a survey looking into patient experience.
The survey is open to all those living with FSHD in Europe as well as their carers and family members. It looks into patients’ conditions and how they currently manage their symptoms with the aim to gain insight into the experiences and opinions of people living with FSHD in Europe. It covers topics such as patients’ conditions and how they currently manage their symptoms. The survey marks an exciting opportunity in furthering the progression of research into the condition.
This survey, and the information that it will gather, will help drive change for those living with FSHD.
- It will help create better clinical trials, ensuring they consider the experiences and opinions of people with lived experience of FSHD.
- It will highlight how many people are affected by FSHD and therefore show the importance of investing in clinical trials and further research.
- It will gather information on the experiences of people living with FSHD across Europe, how FSHD affects their lives, and the impact that a treatment will have.
As FSHD is a rare condition, it is critical to raise the profile of people living with FSHD and their experiences. FSHD Europe is working with the pharmaceutical industry to ensure that the patients’ voices are heard, and kept at the centre of the frame, when clinical trials are developed. As a member of FSHD Europe, MDUK is excited to take an active role in encouraging patient participation.
By working together, we can create a bigger impact for people living with muscular dystrophy. We will continue magnifying the thoughts and opinions of people living with the condition; this survey is one way in which you can get involved and be truly heard. We are so excited by this opportunity and all the potential that it holds.
Join the 200 people who have already had their say through this survey. Share your views on what you want from FSHD clinical trials and what would encourage you to take part by following this link.
The survey is open until 30 April and we would love to hear your opinions.