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

2. DeNDRoN is a managed network not an organisation
NIHR DeNDRoN is not an organisation: it is a managed network, created to support the development and delivery of clinical research in dementias and neurodegenerative diseases. It is a network of research collaborators – patients, carers, academics, clinicians and support staff – working together to develop new high quality clinical research. It is a network of NHS trusts, the people that work in them and the people that use their services; working together to ensure that clinical research is delivered on time to target to the benefit of people affected by dementias and neurodegenerative diseases.
The key to DeNDRoN’s success will lie in its integration in the organisations and acceptance by the individuals from which the network is composed. The purpose of the Co-ordinating Centre and Local Research Networks is therefore to provide the leadership and administration necessary to bring the network together; to support the integration of health research and patient care; and to co-ordinate the development of capacity and expertise within the constituent parts of the network necessary to improve the quality and speed of research they support.
net·work / ‘net1wərk/
n. 1. a group or system of interconnected people or organisations 2

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
East Anglia DeNDRoN is one of 7 DeNDRoNs across England.
There are also regions which have ‘Supplementary Resources’ to support research into Motor Neurone Disease & Huntington’s Disease.
The rest of England is supported by National Networks (Comprehensive Local Research Networks) which are not specific to disease areas.
Wales and Scotland operate their own systems via Neurodem in Wales and the Scottish Dementias Network in Scotland.

6. East Anglia DeNDRoN
In 2007 Norfolk & Waveney Mental Health NHS Foundation Trust made a successful bid to host the East Anglia DeNDRoN (Dementias & Neurodegenerative Diseases Research Network) on behalf of 17 local Trusts across Norfolk, Suffolk and Cambridgeshire.
A network is not a legal entity so they are hosted by NHS Trusts or Universities. Our budget flows directly from the DH through the Trust to the network. Dr Andrew Tarbuck is our Clinical Director and acts as my ‘Trust’ line manager, however, the networks are managed by their co-ordinating Centres. Network Managers report directly to the Coordinating Centre Manager.

7. Norwich

8. Cambridge

9. What does DeNDRoN do? LRN National
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