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Euro Huntington's disease network [logo]
Quality of Life - Meetings - Meeting December 2006 -
The University of Reading
9-10 December 2006


9 Dec (Saturday afternoon)

  1. Presentation of the EHDN Web Portal (Christiane and Asun)
  2. Carer QoL update and planning (Lucienne? Christiane? Aimee absent)
    • Points raised by wider QoL working group attendees at Blankenberge (compiled by Lucienne)
    • Additional points raised post-Blankenberge (Christiane)
  3. Analysis of relationship between carer burden questionnaire and new version of carer questionnaire  
  4. Status of core working group and how we operate
    • Existing members, new members etc
    • How do we communicate/interact with the wider QoL interest group
  5. Looking way ahead – Dresden meeting
  6. As this meeting coincides with the HD World Congress, how about a symposium on quality of life (of carers and patients) to highlight the importance on this area of research and practice, as well as to update people on recent developments in the field? Any thoughts?
  7. Tentative date and venue of next meeting
10 Dec (Sunday morning)
  1. HDQoL project update (Aileen)
    • What has happened to date
    • What is in progress
    • What is planned to begin
    • Comments and questions from the core group
  2. Round table discussion on HDQoL study (Christiane, Bernhard, Aileen)
  3. The purpose of this session is:
    • to have a free discussion/brainstorm session with all core group members regarding key issues pertaining to the project, and
    • to reach a collective understanding and consensus agreement.
    1. Project role and definition of levels of ownership
    2. Project management – two-way communication and consultation structure
    3. Authorship policy (Bernhard)
      • Authorship of thesis arising from the project
      • Authorship of publication(s) arising from the project
      • Issues to consider: ‘Authorship’ vs ‘contributorship’, ‘Multi-part/modified group authorship’
      • See Article 10 of the ‘EHDN constitution’ (see full download version)
      • See guidelines for Authors of Research Manuscripts of The Society for Neuroscience (see full download version)
    4. External collaborators
    5. To be brought to the core group/steering committee for deliberation.
      • Authorship by virtue of their professional/academic and local area data-collection and data-coordination contribution to the project?
      • Steering committee membership (but not core working group membership)? Or both?
    6. Any other business