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

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

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

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

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.

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.

Norwich

Cambridge

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

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

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

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

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

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

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

Thanks to the DeNDRoN East Anglia Team