NEURODEM Cymru Scoping Study Report

 

NEURODEM Cymru Scoping Study Report can be viewed in full by clicking on this link.

 

The executive summary is reproduced below.

 

Executive Summary

1. This scoping study report has been produced by an inclusive partnership of academic organisations, voluntary agencies, health and social care.

2. The proposed scope of a research network is ‘the dementias and neurodegenerative disorders (including Alzheimer’s)’, to remain consistent with the call for tenders for the UK Co-ordinating Centre. These conditions affect at least 47,000 people in Wales, a significant number of whom are of working age. Meeting their needs effectively continues to be one of the major challenges for health and social care services.

3. The study has indicated that there is a strong basis for research in this area to continue to develop in Wales. Currently funded projects bring in external funds of over five million pounds, and over 200 publications with input from researchers in Wales have appeared in the scientific literature over the last five years. Current research covers the whole range from basic biochemical and genetic research to research on service delivery and policy. There is a wide geographical spread of the current research.

4. Voluntary organisations in Wales in this field have strong grass-roots support, and have helped to foster partnership between professionals and patients and carers. They offer a tried and tested route for involvement of patients and carers in the research process.

5. There is strong interest from health and social care practitioners in developing services in an evidence-based fashion, in being involved in research activity and in implementing new findings and approaches.

6. Research in Wales could be strengthened by enhancing recruitment to studies, developing more collaborative approaches in Wales and building on existing 3

collaborations in the UK and internationally. Supporting research partnerships between practitioners and researchers is essential.

7. Although stakeholders could see the need for close partnership with other research networks, including mental health, primary care and older people, a need for sufficient support to enable a distinct network to operate for the dementias and degenerative disorders was emphasised. A distinct network is needed to allow a good match with the UK Clinical Research Collaboration priorities, and is consistent with the priorities of the Welsh Assembly Government, falling at the interface of the priorities of older people and mental health.