Involving people affected by these conditions: Patients, Carers and the Public
Introdution:
Introdution:
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.
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