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Euro Huntington's disease network [logo]
Meeting 2009 -

First meeting of Environmental Modifiers Working Group, 5th June 2009, London UK

The inaugural meeting of the Environmental Modifiers Working Group will be held in London, Friday 5th June 2009.

We envisage a number of topics being presented and discussed relating to the identification of lifestyle or other environmental factors which may impact upon the onset and progression of HD. The major foci will be firstly on the short-term conduct of a retrospective study, and secondly on the development of a more sophisticated and definitive prospective study. The topics will include, but are not limited to:
  1. The findings of the Australasian study of the impact of lifestyle activity on the age at onset of HD. This study, which suggests that avoiding a passive lifestyle may delay the age at onset, was the forerunner to the retrospective study proposed for the EHDN.
  2. Estimation of the sample size to replicate and / or extend the findings of the previous study (biostatistician).
  3. The logistics of implementing this study in Europe (broad group) – including recruiting, administering of the questionnaire, handling of data, timelines, funding, etc.
  4. The training of interviewers to maintain consistency of data collection
  5. Open forum on the development of an entirely new prospective study of the influence of environmental or lifestyle factors on the age at onset of disease.  Input into this very broad topic will be welcomed from any interested party.
  6. Environmental factors and disease progression.
We strongly encourage any member of EHDN interested in this research to attend and become involved.

The full agenda for this meeting can be found here.