Dementias

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Dementias Neurodegenerative Diseases Research
Network
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Dementias Neurodegenerative Diseases Research
Network

• By developing a world class infrastructure for
  clinical research in dementias
  neurodegenerative diseases

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Background

• Major concerns about the state of clinical
  research in the UK
• Pharmaceuticals Industries Competitiveness Task
  Force (PICTF) 2001
• Biosciences Innovations Growth Team (BIGT) 2003
• Academy of Medical Sciences (AMS) 2003
• Establishment of Research for Patients Benefit
  Working Party
• Establishment of Clinical Research Networks
  (CRNs)
• Cancer (2001)
• Mental Health (2003)

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Background

• DoH announcement March 2004 extra 100m p.a. by
  2008 for research (in England) building on
  successful model for cancer research
• Targeted research funding
• Medicines for Children
• Diabetes
• Dementias and Neurodegenerative Disease (DeNDRoN)
• Stroke
• UK Clinical Research Collaboration (UKCRC)
• Clinical Research Network model (UKCRN)
• NHS RD Strategy Best Research for Best Health

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What is the UKCRC?

• Partnership between government, the NHS, the
  voluntary sector, the private sector and the
  public
• Aim is to transform the clinical research
  environment in the UK by
• Taking strategic oversight of clinical research
• Identifying gaps in clinical research capability
  and opportunities for action
• Developing coordinated approaches to addressing
  gaps/responding to opportunities
• Monitoring progress in implementing plans and
  achieving objectives
• Providing leadership to develop the profile of
  clinical research and enhance the research
  culture of the NHS

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Who are UKCRC?
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UKCRC Workstreams

• Building up the infrastructure in the NHS
• Clinical Research Networks
• Experimental Medicine, including development of a
  national framework of clinical research
  facilities
• NIHR Programme Support for Applied Research
• Building up the Research Workforce
• Phase 1 Academic Medicine
• Phase 2 Nursing staff
• Phase 3 Others involved in Research
• Coordinating Research Funding Activity
• Strategic analysis of clinical research funding
  in the UK
• Develop joint initiatives in public health
  research
• Develop coherent approaches to funding of network
  areas
• Streamlining the Regulatory and Governance
  Processes

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What is the UKCRN?

• UKCRN will consist of a managed set of Clinical
  Research Networks to facilitate the conduct of
  randomised trials and other well designed studies
• Research projects funded by both commercial and
  non-commercial organisations will be incorporated
• 6 initial priority areas Cancer (NCRN), Mental
  Health (MHRN), Medicines for Children (MCRN),
  Diabetes (DRN), Stroke (SRN) and Dementias and
  Neurodegenerative Disease (DeNDRoN). Each has a
  small Coordinating Centre
• Future intention to extend UKCRN to cover full
  spectrum of disease and clinical need
• Links with developments in Scotland, Wales and
  Northern Ireland
• Aim to provide a world-class health service
  infrastructure to support clinical research
• Co-Directors Professors Janet Darbyshire and
  Peter Selby

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Organisational Structure of UKCRC/N
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Topic Specific Network Directors
UKCRN National CC Co- Directors Prof Janet
Darbyshire Prof Peter Selby
Mental Health DirectorProf Til Wykes
Cancer Director (acting) Prof Rick Kaplan
Stroke DirectorProf Gary Ford
Medicines for Children DirectorProf Ros Smyth
Diabetes DirectorProf Des Johnston
DeNDRoN Co- DirectorsProf Martin Rossor Prof
Ian McKeith
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Dementias Neurodegenerative Diseases Research
Network

• Developing a world class infrastructure for
  clinical research in dementias
  neurodegenerative diseases

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Aims

• The aim of DeNDRoN and its associated Local
  Research Networks is
• to facilitate the conduct of randomised
  prospective trials and other well-designed
  studies, including those for prevention,
  diagnosis and treatment

This will in turn

• Improve patient care
• Improve the coordination of research
• Improve the speed of research
• Maintain and enhance the quality of research
• Improve the integration of research
• Expand and enhance participation in research

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London (UCL) and Newcastle Co-ordinating Centre
Offices
Ian McKeith Deputy Manager-Clare Morgan PA
tba Responsible for managing CSGs
portfolio development training and
education
Martin Rossor Network Manager Piers Kotting PA
Peter Gudge
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What is the role of the DeNDRoN Coordinating
Centre?

• Main point of contact with UKCRNCC (LON)
• Management of the 7 Local Research Networks
  (LON)
• Performance management of Research Networks
  (LON/NCL)
• Oversight of portfolio development (NCL)
• Management of CSGs (NCL)
• Provision of topic-specific training (NCL)
• Coordination of patient and public involvement
  (PPI) (LON)
• Links with relevant trials units (LON/NCL)

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Organisational Structure
UKCRC
UKCRN
DeNDRoN Operational Steering Group
DeNDRoN Coordinating Centre
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Organisational Structure
UKCRC
UKCRN
DeNDRoN Operational Steering Group
World class clinical research infrastructure
UK clinical research portfolio
DeNDRoN Coordinating Centre
Local Research Networks
Clinical Studies Groups
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Organisational Structure
UKCRC
UKCRN
DeNDRoN Operational Steering Group
World class clinical research infrastructure
UK clinical research portfolio
DeNDRoN Coordinating Centre
Local Research Networks
Clinical Studies Groups
Dementia PD MND HD Prim Care
Special interest groups
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Organisational Structure
UKCRC
UKCRN
DeNDRoN Operational Steering Group
World class clinical research infrastructure
UK clinical research portfolio
DeNDRoN Coordinating Centre
Local Research Networks
Clinical Studies Groups
Dementia A. Burns PD A. Lees MND A. Rosser HD
P. Shaw Prim Care S. Iliffe
Special interest groups
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Organisational Structure
UKCRC
UKCRN
DeNDRoN Operational Steering Group
World class clinical research infrastructure
UK clinical research portfolio
DeNDRoN Coordinating Centre
Local Research Networks
Clinical Studies Groups
Dementia A. Burns PD A. Lees MND A. Rosser HD
P. Shaw Prim Care S. Iliffe
North East North West East Anglia Thames
Valley North Thames South Coast South West
Special interest groups
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What are the roles of a Local Research Network
(LRN)?

• Primary vehicle for providing infrastructure to
  support study involvement
• Must comprise primary, secondary and tertiary
  care (and social care)
• All appoint Clinical Lead (p/t) and Network
  Manager (f/t)
• A typical LRN will include some/all of the
  following
• Appropriate NHS staff costs research nurses,
  data managers, secretarial support, other
  clinical staff sessions
• Appropriate infrastructure in the primary care
  setting practice nurse time, receptionist time,
  manager time
• Appropriate diagnostic test or clinical services
  costs pharmacy, pathology, radiology
• Essential running costs
• Must be embedded into clinical care provision
• Average LRN receives 300-400k pa

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Current Activity (July 06)

• LRNs are
• signing contracts with DoH
• appointing staff
• establishing local structures
• Site visits to LRNs by CC team
• Advertisment for CSG membership

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Priority list

• Adoption of current and new trials into
  DeNDRoN
• LRNs becoming fully operational
• Increased awareness through local and
  national events

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Challenges for DeNDRoN

• To manage complex trials across a range of
  diseases which straddle clinical specialties
• neurology
• old age psychiatry
• geriatric medicine
• To harmonise clinical research activity with
• demnds of service delivery
• other types of clinical research
• To demonstrate our success
• number of trials
• participation
• recruitment
• completion

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Will DeNDRoN work?
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Will DeNDRoN work?

• Evidence from the National Cancer Research
  Network (NCRN)

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Recruitment to a breast cancer trial
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• If delivered properly DeNDRoN should harness UK
  academic and clinical energies with potential to
  improve the quality of clinical trials and
  improve quality of patient care