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Get involved with the DeNDRoN Huntington’s disease Clinical Studies Group

April 2008

DeNDRoN Huntington’s disease Clinical Studies Group (HD CSG) wishes to recruit patient/public members to support its national committee. We are committed to involving patients, carers and the public in our research activities, and therefore are seeking individuals who wish to occasionally contribute to our DeNDRoN HD CSG which meets several times a year in either Birmingham, Cardiff, Manchester or London.

Each patient/public member must be one of the following:

• a carer or ex-carer of a patient with Huntington’s disease
• other members of the public with some relevant experience of Huntington’s disease
• a patient affected by Huntington’s disease

DeNDRoN is part of the UK Clinical Research Network. It facilitates the conduct of research trials in dementias and neurodegenerative diseases. DeNDRoN is a UK-wide initiative to promote collaboration between people affected by these diseases, academics, clinicians, NHS Trusts, researchers and funders. The Huntington’s disease CSG is comprised of clinicians, researchers and patient representatives.

The role

The role of a patient/public member is to contribute to the development of DeNDRoN nationally by representing those who have experience of Huntington’s disease. We wish to assemble a number of representatives to act as patient advocates. The role may involve attending CSG meetings when required or acting as a point of reference for the Committee on an ad hoc basis for issues relevant to patients.

The most important personal skill for the role is to provide a balanced understanding of the wide range of different perspectives shared by Huntington’s disease patients, carers and the wider public. Members will also need to be able to demonstrate a reasonable level of understanding of clinical research issues and processes in this field, and will have a personal commitment to developing neurodegenerative disease research.

This is an unpaid voluntary post, but agreed reasonable expenses will be reimbursed. Technical advice will be available while preparing for and participating in meetings.

Further details

• Please visit the DeNDRoN website for further information – www.dendron.org.uk

• If you are interested in being part of the lay panel as described above, please submit an application or supporting statement (this can be brief – a half to a page of A4) to outline your experience of HD and the skills you feel you can bring to the panel by May 31st 2008..

• Please send to: DeNDRoN, The Wolfson Centre, Mecklenburgh Square, London, WC1N 2AP