We primarily will gather available information, both from scientific sources as well as from clinicians of all related disciplines. This information will be evaluated and weighted according to current recommendations such as GRADE (where applicable).
We also strive to foster cooperation between the different disciplines engaged in clinical care by cooperating with neighbouring Working Groups.
Our goals are:
- to broadly disseminate the available knowledge on prevalence, clinical features of and clinical approaches to dysphagia in HD in an easy-to-understand fashion,
- to identify existing gaps in providing appropriate care,
- to identify existing gaps in scientific and clinical knowledge and formulate topics for future research.
- In a first step, we will perform a literature review and will enrich it with clinical recommendations based on clinical experience from international experts. This will be formulated as a position paper of the EHDN upon completion.
- A companion paper or leaflet, containing only the most important clinical recommendations, will be created in an easy-to-understand format, to be used by patients, caregivers and practicing therapists and doctors (potentially in multiple languages).
- Finally, we will try to identify future directions of research that should be addressed based on major unmet clinical needs. The latter will be identified from the literature review, own clinical expertise of the working group and outreach to additional experts in Europe.
Associated EHDN Language Area Coordinator:
Fiona Loveday, EHDN Lanco, U.K.