HD research: Treatment & prevention
DeNDRoN recruits lay members
January 2009
Sarah Hands and Pete Webb have been accepted for the roles of Lay Members (voluntary advisory roles) on the Huntington's Disease Clinical Support Group for the Degenerative and Neurological Diseases Research Organisation (DeNDRoN).
The basic role of a Lay Member is as follows:
- Provide their perspective as a person affected by neurodegenerative diseases into the development, management and reporting of individual clinical studies
- Offer advice on the active development of Public/Patient Involvement
- Assist with the prioritisation and development of the overall portfolio of clinical studies
- Feedback to the Patient and Public Involvement Forum, relevant issues arising from the Clinical Studies Groups
There is further information on the DeNDRoN website here:
- DeNDRoN: http://www.dendron.org.uk
- DeNDRoN HD CSG: http://www.dendron.org.uk/cr/HuntingtonsCSG.html
There is also a thread on the HDA Message Board.
As such, these posts are to represent those affected by Huntington's Disease, whether they are carers, sufferers or pre-symptomatic and the positions last for three years.
There are some things that cannot be talked about due to confidentiality, but of course when possible, you will be kept updated and your input will be requested when appropriate.
If you or your group members have questions or would like further information, Sarah's and/or Pete's contact details can be obtained from Head Office.
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