The DeNDRoN Coordinating Centre will establish a working party that will be responsible for overseeing the development and monitoring of the progress of patient and public involvement in the Dementias & Neurodegenerative Diseases Research Network. The Working Group comprises of experts who have experience and expertise in involving patients and carers in research and service development; people affected by these conditions with some experience of active involvement in research; representatives of dementia, Parkinson’s, MND and Huntington’s medical research & support charities; and representatives of the DeNDRoN Coordinating Centre.

The remit of the Patient and Public Involvement Working Group will be:

• To ensure that the interests of patients, carers and the public are fully taken into account within the work of the DeNDRoN
• To operate at a strategic level and assist with the development of overall DeNDRoN policy in respect of improving clinical research for the benefit of people affected by these conditions 
• To review and amend as necessary the ‘aims’, ‘principles’ and ‘objectives’ of our PPI programme
• To develop a ‘road map’ of how the DeNDRoN Coordinating Centre should undertake to develop our PPI programme in order to deliver the ‘aims’, ‘principles’ and ‘objectives’ as agreed by the Working Group

The Working Group will meet quarterly for the first year, with the frequency of meetings to be reviewed at that point.

If you are interested in more information about joining the Patient and Public Involvement Working Group, please contact:

Terry McGrath
PPI Coordinator
Dementias & Neurodegenerative Diseases Research Network (DeNDRoN)
Box 81
8-11 Queen Square
LONDON
WC1N 3BG
Tel: 020 7676 2121
Fax: 020 7676 2122