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Euro Huntington's disease network [logo]
Working Groups - Quality of Life -

QoL is an outcome measurement. The prerequisite is a systematic data collection and evaluation about the well-being of patients and their caregivers. It is used in chronic diseases. So quality of life refers to the overall status of a combination of factors: a person's health, symptoms, and level of physical and social functioning. If an illness and its treatment have a negative impact on a person's sense of well-being and ability to perform daily activities, then quality of life may be poor.

The Quality of Life Working Group is a multidisciplinary group of professionals and lay people who are interested in matters of quality of life in Huntington’s disease.
The working group aims to develop two instruments to assess quality of life:
  1. a self-report questionnaire for carers of HD patients and
  2. a self-report questionnaire for HD affected people.

Current projects

The Quality of Life Working Group focuses on the following projects:
  1. Development and validation of a quality of life questionnaire for family members who are carers of people with Huntington’s disease.
  2. Development of a disease-specific health-related quality of life instrument for people with Huntington’s disease.

At the moment (June 2008) the Quality of Life Working Group consists of 29 active members from Austria, Belgium, Czech Republic, France, Germany, Italy, The Netherlands, Portugal, Spain and the United Kingdom, including psychologists and social workers, as well as members of European Huntington associations representing HD families.


Lead facilitators
Mrs. Christiane Lohkamp
ehemalige Vorsitzende DHH, Alumni
Deutsche Huntington-Hilfe e.V.
Postal address: Sprollstraße 89
70597 Stuttgart
phone: +49 711 7288583
fax: +49 711 7288583
Dr. Aileen Ho
Lead Facilitator Functional Ability, Co-Lead Facilitator QoL
University of Reading, School of Psychology
Postal address: 3 Earley Gate Whiteknights Road
RG6 6AL Reading
phone: +44 118 3785550
fax: +44 118 3786715
Mrs. Beatrice De Schepper
HDA Belgium
Huntington Liga
Postal address: Spelonckvaart 30
9180 Moerbeke-Waas
phone: +32 9 346 89 91

Associated Language Area Coordinator (Lanco)

, Spain