European FSHD patient survey launched!

April 15, 2022 By Bine Haase


Over 900 people with FSHD and/or their caregivers/relatives have completed this important survey across Europe so far!
Take your chance to give your opinion so that future clinical trials can be better planned, developed and conducted. The survey is open for participation until 9 May 2022.

An important study between FSHD Europe and the John Walton Muscular Dystrophy Research Centre (JWMDRC) at Newcastle University has gone online today.

Several pharmaceutical companies are becoming more and more interested in conducting clinical trials on FSHD in Europe.

To ensure that patients are involved and able to participate in the development of trials to the fullest extent possible, FSHD Europe is working with the pharmaceutical industry.

In order to achieve this, FSHD Europe is conducting a large-scale survey of patients and their caregivers/relatives across Europe.

FSHD Europe is funding the JWMDRC to develop, conduct and analyse this survey. The survey will include questions about patients’ condition and how they currently manage it. Questions will also be asked to gain insight into the FSHD community’s thoughts and opinions on clinical trials and what might encourage them to participate.

We hope that this survey will resonate well with the FSHD community across Europe and hope that as many patients and caregivers/relatives as possible will participate. There are no right or wrong answers, we are looking for your opinion!

The survey will be available to complete online from 15 April until 9 May 2022.

FSHD Europe is committed to sharing the results of the survey with the entire FSHD community!

Please follow this link to complete the survey in ๐Ÿ‡ฌ๐Ÿ‡ง English.
Links to the survey are also available in ๐Ÿ‡ณ๐Ÿ‡ฑ Dutch, ๐Ÿ‡ซ๐Ÿ‡ท French, ๐Ÿ‡ฉ๐Ÿ‡ช German, ๐Ÿ‡ฎ๐Ÿ‡น Italian and ๐Ÿ‡ช๐Ÿ‡ธ Spanish.

If you have questions or would like further information, please contact Megan McNiff at JWMDRC:

Here is all information about the European FSHD Patient Survey in a compact format for downloading (and sharing) in all available languages: