Public and Patient Involvement
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.
Why involve people affected by these conditions in research?
Involving patients and the public in research is an increasingly important part of the strategic direction for a range of organisations
How are we going to coordinate effective patient & public involvement?
The co-ordination of patient and care involvement presents a particular challenge for DeNDRoN
What is the background to involving patients, carers & the public in 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
How will people affected by these conditions get involved in 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
How are we going to develop effective patient & public involvement in research?
The DeNDRoN Co-ordinating 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
Patient Registers and Patient Related Organisations 