The following text offers a direct translation of the Dutch guidelines for care for FSHD patients and their families. The topics for these guidelines and the questions they raised were identified by a panel of patients, patient representatives and medical experts on the management of this disease. These topics relate to areas of perceived or suspected absence of consensual answers in the published literature.
The internationally accepted grade methodology for analysing the published literature was used, which led to the demonstration of a poor evidence for most questions asked. The panel then formulated recommendations which are the reflection of its extensive experience in managing the disease. These are to some extent specifically written for and applicable to the Dutch health care system and might not be seen in a similar way in other countries. The recommendations are an ongoing project in The Netherlands and could be presented as a to do list for future clinical studies which are dearly needed.
We hope these recommendations trigger a discussion and are curious to hear your feedback.