The Advanced HD Working Group aims to map the provision of care for advanced HD within EHDN (settings, standard of care, therapies and support provided, carers support provided). It will support and enable participation of people with advanced HD in REGISTRY as well as other research projects of the network.
Design a questionnaire for clinicians/organisations to gather information about the provision of care for people with advanced HD, distribute the questionnaire to the centres within EHDN, collect the data and produce a report of the findings.
Design a consent form and information sheet to enable participation of people with Advanced HD in REGISTRY (use of drawing, pictures, simple sentences), review the existing questionnaires and data collected for REGISTRY to propose adaptation for advanced HD.
Dr. Sophie Duport
Head of Research, Investigateur principal, Animateur principal The Royal Hospital for Neuro-disability, Research and Development
West Hill SW15 3SW London U.K.
+44 20 87804531
Katia Youssov, Dr, MD, PhD
Neurologue, Co-investigateur, Evaluateur moteur, Evaluateur cognitif Hôpital Henri Mondor, Service de Neurologie
51 avenue du Maréchal de Lattre de Tassigny 94010 Créteil cedex France
+33 (0)1 49 81 43 01
Associated Language Area Coordinator (Lanco)
This working group is actively seeking scientists and clinicians from Europe and worldwide who share an interest in the advanced stages of Huntington’s disease.