Involving people affected by these conditions:
Patients, Carers and the Public
Aims
- To ensure that the views and perspectives of people affected by these conditions inform the DeNDRoN strategy
- To develop systems to inform and actively involve people affected by these conditions in clinical research at all stages of the research process both locally and nationally
Objectives
- To form a working party 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 charities; and representatives of the DeNDRoN Coordinating Centre
- To establish and support a group of people affected by these conditions who will advise the Dementias & Neurodegenerative Diseases Research Network Directors, Operational Steering Group, Clinical Studies Groups and Study Adoption Panel about neurodegenerative disease research from the perspective of those affected by these conditions
- To advise and if required provide training for the Dementias & Neurodegenerative Diseases Research Network Local Research Networks about involving patients, carers and the public in research.
- To develop good practice guidelines about different methods and levels of active involvement of people affected by these conditions in research.
- To be a central resource to provide input into the development of new research studies and lay peer review of research proposals and papers.
- To organise annual meetings in Dementias & Neurodegenerative Diseases Research Network Local Research Networks which will inform patients, carers and the public about recent developments in neurodegenerative diseases research and network activities.
- To develop strategies to inform people affected by these conditions about neurodegenerative diseases research and the Dementias & Neurodegenerative Diseases Research Network via appropriate media e.g. DeNDRoN website and newsletter.