Neurodegenerative diseases research, Primary Care, Dementia, Alzheimer's disease, Motor Neurone disease, MND, Parkinson's disease, Huntington's disease
Primary Care CSG
Chair: Professor Louise Robinson, Newcastle UniversityResearch into neurodegenerative diseases in primary care is relatively underdeveloped. As such diseases are either relatively uncommon (like dementia and Parkinson’s disease) or just rare (for example MND and Huntington’s disease), primary care practitioners do not easily develop experience in the care and management of people living with these illnesses. DeNDRoN’s Primary Care Clinical Studies Group therefore starts from a low baseline of research activity; however progress in this area may be accelerated by the recent publication of the National Dementia Strategy which may raise awareness of such diseases.
The Primary Care CSG meets twice yearly with teleconferences as and when needed. Membership of the group comprises a broad range of clinical and academic expertise including general practice, nursing, social work, psychology, neurology and old age psychiatry; epidemiology, statistics and health economics are also represented. All have research and development expertise, as well as clinical/service experience in neurodegenerative disorders. We have had user involvement from the outset and have five lay members.
Primary Care CSG Roles:
- Identifying existing high quality studies that should be adopted by DeNDRoN
- Actively engaging with other DeNDRoN CSGs
- Contributing to the development of high quality DeNDRoN research applications
- Contributing to the DeNDRoN annual report and peer-review of the portfolio
- Contributing to consultation exercises as requested for example Department of Health Dementia Research summit
- Providing expert advice on Primary Care issues to DeNDRoN and other relevant bodies
- Generating ideas for new studies and identifying research priorities
Research priorities:
- Clinical predictors of conversion from MCI to dementia syndrome
- Secondary prevention of progression from MCI to dementia syndrome
- Improving early recognition in primary care (dementias, Parkinson’s disease)
- Characterising pathways into services (for diagnosis, treatments and support)
- Secondary prevention of disablement in diagnosed dementia syndromes
- Effects of co-morbidities on dementia progression
- Effects of case management of comorbidities on dementia progression
- ‘Best buy’ models of generalism/specialism in neurodegenerative disorders
- Supporting independence: telecare and assistive technologies
- End of life care
These themes were matched against research methodologies like: prospective longitudinal studies in unselected populations; development, feasibility testing and trialling of interventions, particularly educational ones; retrospective database analysis; and Fourth generation/Realist approaches to service evaluation. The debate in the CSG is now about refining and prioritising themes, and focusing on specific research questions that could be the basis of future research proposals, or that could inform calls for research from major funders.
List of Primary Care CSG members 