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Euro Huntington's disease network [logo]
Working Groups - Advanced HD -

Description

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.

Current projects

  1. 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.
  2. 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.
 
Lead facilitators:
Dr. Sophie Duport
Head of Research, Principal Investigator, Lead Facilitator
The Royal Hospital for Neuro-disability, Research and Development
Postal address: West Hill
SW15 3SW London
U.K.
phone: +44 20 87804531
e-mail: 
Katia Youssov, Dr, MD, PhD
Neurologue, Co-Investigator, Motor Rater, Cognitive Rater
Hôpital Henri Mondor, Service de Neurologie
Postal address: 51 avenue du Maréchal de Lattre de Tassigny
94010 Créteil cedex
France
phone: +33 (0)1 49 81 43 01
e-mail: 

Associated Language Area Coordinator (Lanco)

, France

Membership

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.