Introducing DeNDRoN East Anglia

1. What is DeNDRoN? What does it do? What is the evidence it is successful? Where next? Introducing DeNDRoN East Anglia

2. DeNDRoN is a managed network not an organisation net·work / ‘net1wərk/ n. 1. a group or system of interconnected people or organisations

3. DeNDRoN Aims to: Support development & delivery of clinical research in dementia & neurodegenerative diseases By: Providing leadership & administrative support to allow the integration of health research & patient care Developing capacity & expertise to improve the speed & quality of research

4. Through developing a strong network our vision is that... All patients with a neurodegenerative disease* have the opportunity to participate in and benefit from high quality clinical research *Dementia Parkinson’s Disease Huntington’s Disease Motor Neurone Disease

5. The 7 DeNDRoNs

6. East Anglia DeNDRoN

7. Norwich

8. Cambridge

9. What does DeNDRoN do? • LRN • Provide clinical leadership for research • Assist local researchers to undertake NIHR Portfolio studies • Develop new research sites & investigators • Patient & public involvement • Annual budget £500k / LRN • National • Develop new studies (CSG, writing groups) • Adopt studies onto the NIHR Portfolio • Coordinate the strategic development of neurodegenerative research in England • Promote collaboration between patients, carers, researchers, academics, NHS trusts, funding bodies & industry • Support & guidance to LRNs

10. DeNDRoN East Anglia – Strategy • Support existing research active sites • Financial input & DeNDRoN research staff • Encourage involvement in complex studies • Develop new sites & PIs • Active promotion of DeNDRoN in periphery • Targeting of potential PIs • Acting as “broker” between new sites / PIs & sponsor • DeNDRoN staff involvement throughout study • Facilitation & encouragement of local staff • Deploy DeNDRoN staff locally when research activity justifies it

11. What Has DeNDRoN East Anglia Achieved? • Increased number of: • Studies • Research sites • Principal Investigators • Patients recruited into research • Contributed to development of academic base in East Anglia • Closer working with local academic departments • Development of academic posts in Old Age Psychiatry

12. DeNDRoN PIs (2006) • 11 Studies • 9 Principal investigators • 55% Neurologists • 11% Old Age Psychiatrists • 55% Cambridge-based

13. Cumulative DeNDRoN PIs (2006 – 2010) • 39 Studies • 27 PIs • 41% Neurologists • 37% Old Age Psychiatrists • 48% Cambridge-based

14. New DeNDRoN PIs (2006 – 2010) • 16 New PIs • 25% Neurologists • 56% Old Age Psychiatrists • 25% Cambridge-based • 75% Outside Cambridge

17. Where Next? • Increase locally-generated studies • Local Research Directors • Local Dementia Research Interest Group (HIEC) • Local writing groups • Improve recruitment (numbers & speed) • Development of “Entirely Research Active” demonstration site • Integration of research into local care pathways • Routine invitation at first contact with service to participate in research • Case registers / Recruitment & Facilitation Tools (RAFTs) • Increase research capacity by developing further sites & PIs • Reduce time delays by closer working with CLRNs & NHS R&D departments

18. Thanks to the DeNDRoN East Anglia Team