Participate in an International Survey on Advance Care Planning and Palliative Care in FSHD
28 September 2026
People living with Facioscapulohumeral Muscular Dystrophy (FSHD) are invited to take part in an international survey exploring Advance Care Planning and palliative care. This study is being conducted by Radboud University Medical Centre in the Netherlands, in collaboration with FSHD Global, FSHD Europe and FSHD Stichting.
The aim of this survey is to better understand what matters most to people with FSHD regarding their current and future care. Researchers would like to learn more about patients’ experiences, their care preferences, and the support they may need as their condition evolves.
Advance Care Planning is the process of reflecting on and discussing your future healthcare wishes and personal care preferences. Palliative care focuses on improving quality of life by preventing and relieving suffering and providing support for patients and their families at any stage of the disease.
The survey is anonymous, voluntary, and takes approximately 20 minutes to complete. Please note that because responses are anonymous, it is not possible to save your progress and continue the survey at a later time. No directly identifying personal information is collected.
For more information about the study and its background, please visit the FSHD Global website.
Help improve FSHD care
For questions or comments, please contact the research team at: FSHDonderzoek@radboudumc.nl
European Patient Survey 2024
FSHD Europe performed a European Patient Survey: ‘Assessing Patient Reported Disease Burden and Preferences in Clinical Trial Participation’. The study revealed what FSHD patients and their caregivers expect from future clinical trials and what would encourage them to participate in them. 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.