Attention Patient Advocate Leaders:
You are invited to participate in a study on Advance Care Planning and palliative care in FSHD. This study is conducted by Radboud University Medical Centre, the Netherlands, in collaboration with FSHD Global and FSHD Europe.
Advance Care Planning is the process of thinking about and planning for your current and future health and personal care.
Palliative care aims to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease.
With this survey, we would like to better understand what is important to people with FSHD regarding their care, what their experiences have been and what help and support they may need in the future. More information about why we are conducting this study can be found on this website: FSHDGlobal.org
Completing the survey takes approximately 20 minutes. As the questionnaire is anonymous, you will not be able to save your progress and return to it later. Participation is voluntary. We do not ask for information that could directly identify you.
If you would like to participate, please click the following link to complete the survey in a secure online environment. Survey
Thank you very much for considering participation in this study.
If you have any questions or comments, please contact the research team by email at: FSHDonderzoek@radboudumc.nl