Our Patient and Public Involvement
strategy will play a pivotal role in ensuring that the Dementias &
Neurodegenerative Diseases Network (DeNDRoN) supports clinical research that is
of the highest quality, and is of direct relevance to people affected by these
diseases, including dementia, Parkinson’s disease, motor neurone disease and
Huntington’s disease. The adoption of clinical studies to the Network will be
done in partnership, between people affected by these conditions, and the
clinical researchers and healthcare professionals working in this field. Both
groups will contribute to the prioritisation, design, conduct, reporting and
dissemination of research.
Strengthening patient and
public engagement in health care decision-making and research is a
key strategy for improving health and the quality and relevance of
research
One of the initial
objectives of the working party is to establish and support a network
of people who have had dementia, PD, MND or HD; their carers; and the
public
The DeNDRoN Coordinating
Centre is in the process of establishing a working party that will be
responsible for overseeing the development and monitoring of the
progress of patient and carer participation
We are inviting patients and
carers and anyone affected by these conditions to register and have a say in
DeNDRoN. We want people around the country who are willing to
share their thoughts and perspectives, give their views on ideas
for research, review study designs, say what they think are the
best outcome measures for research, or advise on any aspects of
DeNDRoN
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