Wales Dementias and Neurodegenerative Diseases Research Network

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Wales Dementias and Neurodegenerative Diseases
Research Network

• Role and development of a Thematic Research
  Network
• Bob Woods
• Bangor University

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What is a TRN?

• responsible for developing research proposals
  with the aim of attracting more research  to
  Wales. The TRNs support partnerships between
  service users, researchers, methodologists and
  research support staff to develop and implement
  new research studies and clinical trials

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Current TRNs

• Children Young Peoples Research Network
• Mental Health Research Network Cymru
• Diabetes Research Network
• Learning Disabilities Autism Research Network
• Older People Ageing Research Network
• Public Health Improvement Research Network
• Wales Epilepsy Research Network
• Thematic Research Network for Emergency
  Unscheduled Treatment
• Cancer
• NEURODEM

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Development of TRNs

• Formed in 2005, following a number of scoping
  studies
• Competitive process
• Some (not all) map onto UK thematic networks
  e.g. MHRN, DeNDRoN, Diabetes
• Review undertaken by WORD in 2008
• Recommissioning now underway again a
  competitive process between areas for TRNs
• From April 2010, Registered Research Groups

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Registered Research Groups

• NISCHR Registered Research Groups (RRGs) will
  provide the current TRN functions of
• generating research proposals in areas of topical
  significance and opportunity
• winning grant funding
• generating a growing research portfolio of
  high-quality, people-focused research and
• engaging and collaborating with UK-wide groups
  (where these exist and where participation is
  beneficial to Welsh RD or to patients and
  service users in Wales).

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Different focus

• In England, TRNs manage research professional
  network, and are performance managed on accrual
  to studies
• In Wales, CRC Cymru responsible for RPN
• MHRN-C, LDAN and NEURODEM made case for
  specialist Clinical Studies Officers to support
  studies in their areas
• TRNs in Wales judged on research portfolio and
  grant capture

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Progress highlights2006

• Establishment of steering group
• Development of User-Carer programme, led by
  Alzheimers Society
• Links made with DeNDRoN UK
• Links made with other groups in CRC Cymru
• Links with practice e.g. through All-Wales
  Improvement Network for Mental Health in Older
  People

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2007 Highlights

• March 2007 Conference at LL Wells, addressed by
  Professor Martin Rossor, Director DeNDRoN UK
• NEURODEM members on 5 DeNDRoN UK Clinical Studies
  Groups
• Dementia
• Huntingtons
• Parkinsons
• Primary care
• Methodology
• Research Fellows in post

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2008 Highlights

• May 2008 Conference in Cardiff, addressed by
  Professor Ian McKeith, Associate Director DeNDRoN
  UK
• Initial meetings of NEURODEM Research Development
  Groups
• Dementia social care housing
• Vascular cognitive impairment
• Parkinsons
• Special project to establish opt-in database
  underway

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2009 Highlights

• May 2009 Conference in Cardiff, addressed by
  Professor David Burn, UK lead for Parkinsons CSG
• Initial meetings of additional NEURODEM Research
  Development Groups
• Dementia Imaging (joint with MHRN-C)
• Arts and dementia
• Neurorehabilitation
• Special project opt-in database operational
• Proposals for recommissioning developed
• Involvement in National Dementia Action Plan

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Examples of funding successes

• A comprehensive profile of awareness in
  early-stage dementia (MIDAS) (ESRC 740K PI
  Linda Clare, Bangor) 2007
• Genome-wide association scanning to identify
  genetic risk factors for Alzheimers disease
  (Wellcome 1.3million PI Julie Williams,
  Cardiff) 2007
• Reminiscence groups for people with dementia and
  their carers 8-centre pragmatic RCT (NIHR HTA
  1.2 million PI Bob Woods, Bangor) with NWORTH
  WHES 2007
• Awareness in severe dementia trial platform (MRC
  330K PI Linda Clare, Bangor) with NWORTH 2008
• Unified assessment in Wales older people with
  complex needs and their families (WORD 168K PI
  Diane Seddon, Bangor) with AWARD OPAN 2008
• Links with Infrastructure Support Services e.g.
  NWORTH WHESS (trials unit and health economics)

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Research portfolio

• 68 studies and growing!
• 19 / 158 studies in dementias and
  neurodegenerative diseases on UK portfolio led
  from or involve research teams in Wales
• Portfolio reflects a total research income of 26
  million

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Research portfolio

• 19 involve social care
• 9 involve evaluations of psychosocial
  interventions
• 22 RCTs

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What are we trying to achieve - 1

• A Prospective Study of Mood States in Parkinsons
  Disease (PROMS-PD)
• Multi-centre study 3 sites in England, 1 in North
  Wales (PI John Hindle, NWW NHS Trust)
• With assistance of CSO, recruitment in North
  Wales outstripped other centres! Project has
  achieved 99 recruitment
• New areas taking part in research e.g. Dolgellau
  Hospital

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What are we trying to achieve - 2

• COGREHAB 3 arm RCT individual cognitive
  rehabilitation v relaxation v treatment as usual
• PI Linda Clare funded by Alzheimers Society
• Recruiting from Memory Clinics in all 3 North
  Wales NHS Trusts
• Participants must be on stable dose of Aricept
  before entering project
• Recruitment slow at first with support of CSOs,
  screening notes, liaising with clinics etc. has
  achieved 96 recruitment

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What are we trying to achieve - 3

• Department of Health / Comic Relief issued call
  with 2 weeks notice for Expressions of Interest
  in work on Abuse of older people in care homes
• Research Fellow spotted the call within a week,
  project planned around a new Cardiff / Bangor
  collaboration, involving OPAN and NEURODEM and
  Expression of Interest submitted
• PEACH project commenced April 2009 Dignity in
  Care Homes field work in England

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Factors helping progress

• Strong baseline of activity
• Strong Steering Group
• Development phase at same time as DeNDRoN
• Input of Research Fellows
• Joint posts / steering group members with other
  TRNs
• Over time, a dedicated and committed RPN has
  demonstrated tangible benefits in supporting
  studies, with greater flexibility of input now
  possible

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• National Dementia Strategy launched for
  consultation by Department of Health in England,
  June 19th 2008
• Recommendation 14 A clear picture of research
  evidence and needs
• Outcome evidence to be available on the existing
  UK research base on dementia and on the gaps that
  need to be filled
• Process
• Ministers to convene a research summit
• DoH to generate strategic review strengths to
  build on and gaps in evidence base
• Collaborative programme of dementia research into
  prevention, cause, cure and care
• NEURODEM well represented at UK Dementia Summit,
  July 2009
• Final Wales Dementia Action Plan awaited

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The research agenda - 1
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The research agenda - 2

• Major 5 year study soon to be launched to assess
  and follow a cohort of 5000 older people,
  recruited from primary care
• Will enable comparison with the Cognitive
  Function Ageing Study carried out in Gwynedd in
  early 1990s the benchmark for incidence and
  prevalence data on the dementia
• Will enable comparisons with similar studies in 3
  areas of England
• Will look in depth at social sciences aspects of
  ageing and cognitive impairment effects of
  cognitive reserve, bilingualism, resilience,
  social support etc.
• Collaboration Bangor Swansea, NEURODEM OPAN
• ESRC Large Project Competition