Transcript Slide 1

Identifying research priorities in
the UK Clinical Research Network
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
UKCRN: OVERALL AIM
• To develop UK-wide infrastructure
embedded within the NHS to support
high quality research across all areas
of health and clinical need, funded by
both commercial and non-commercial
funders.
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
Benefits for Patients
• The more rapid introduction of
better treatments and care
• Dissemination of excellence in
clinical care
• Increased opportunity to get
involved
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
Benefits for Professionals
• Coordinated & improved clinical research
environment:
- funders, CTUs, infrastructure- strengthening
capacity/expertise, research participants,
industry, regulatory & governance advice service
• High quality research portfolio
- better trials  more benefits for patients
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
UKCRN: FAMILY OF NETWORKS
England:
Topic specific
Primary care
Comprehensive
Scotland:
Topic specific
Primary care
Wales:
Clinical Research Collaboration Cymru
Thematic
Research professionals
Northern Ireland
Primary Care Clinical Research Network
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
Network
Infrastructure
Industry
Funders
Patients
PortfolioClinical
Studies
Groups
Academic
Funders
Clinical Trials
Units/
RDSUs
NATIONAL COORDINATING CENTRE(S)
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
What is the UKCRN Portfolio?
• A national register of all eligible studies
– DH have defined ‘eligible’ for England –
NIHR portfolio
– Portfolios in Northern Ireland, Scotland and
Wales
– UK-wide working within portfolios
• Includes multi-centre and single centre
studies
• Includes commercial and non-commercial
studies
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
Development of NIHR Portfolio
• Within the Topic-specific Networks and
Primary Care Network – work ongoing to
create portfolio
• All other areas of health care and disease –
project underway to identify relevant studies
by search of NRR database, UKCRC partner
websites, links with funders and chief
investigators to identify new studies and
collect data for the portfolio database
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
UKCRN’s role in portfolio
development and oversight
• Part of the remit of the six Topic specific Clinical
Research Networks (TCRNs) namely Cancer,
Stroke, Diabetes, Mental Health, Dementia and
other neurodegenerative disease, Medicines for
Children and coordinated by TCRN CCs
• Primary Care Research Network (PCRN) will
work with National Schools of Primary Care
Research and Topic – specific Networks
through UKCRN Co-ordinating Centre
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
Comprehensive Research
Network
• Will provide support for all other areas of
health care and disease across the whole of
England
• Coordinated by UKCRN CC
• No remit for portfolio development and
oversight but UKCRN CC will support clinical
researchers, professional societies and
medical charities to drive the portfolio in
specific areas
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
Health Specific Categories
Injuries
Skin
Congenital
Eye
Renal and Urogenital
Stroke
Respiratory
Blood
Ear
Patient Safety
Genetics
Oral and Gastrointestinal
Reproductive Health
Musculoskeletal
Metabolic and Endocrine
Mental Health
Inflammatory and Immune
Cardiovascular
Infection
Neurological
Cancer
Cross-cutting
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
Cancer : national
• 21 Clinical Studies Groups (CSGs) based on
cancer site or cross cutting themes ( e.g.
radiotherapy, complementary medicine)
• Funded by National Cancer Research Institute
(NCRI) and supported by NCRN
• All include at least two patient or carer
representatives
• Consumer Liaison Group brings together and
supports all patient and carer members
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
Cancer: local
• Consumer Research Panels – 6 currently in
place to encourage local involvement. Linked to
Clinical Trials Units and/or Experimental Cancer
Medicine Centres (ECMCs)
• Plans to roll-out
• Develop databases to include consumer activities
across the NCRI, National Cancer Research
Networks across the UK and ECMCs
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
Dementia and Neurodegenerative
Diseases (DeNDRoN)
• Five initial groups :
- Dementias
- Parkinson’s Disease
- Motor Neurone Disease
- Huntington’s Disease
- Primary Care
• New Clinical Studies Groups (CSGs) and
special interest groups being developed
• All will have patient/carer representatives
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
Diabetes (DRN)
• One clinical studies advisory group established –
including patient representation
• Likely to “spin-off” CSGs on specific topics
• All will have patient/carer representatives
• Advocacy Group brings together professionals &
patients to promote and support PPI nationally
and at local network level
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
Medicines for Children (MCRN)
• Covers whole of paediatric medicine!
• Methodology and neonatology CSGs plus 10
CSGs related to clinical systems (e.g.
diabetes, endocrinology and metabolic
medicine)
• Pharmacology and pharmacy CSGs
focussing on formulations etc.
• All will have consumer representatives
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
Mental Health (MHRN)
• No long term Clinical Studies Groups
• Clinical Research Groups funded for two
years to address specific questions
• All have consumer representatives
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
Stroke Research Network (SRN)
• Clinical Studies Groups in- prevention of stroke
- acute stroke
- rehabilitation
- translational research
- primary care
- service development and training
- biostatistics
- patient, carer and public involvement
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
SRN Patient, Carer and Public
Involvement CSG
• Preceded by a Working Party to develop
PCPI Strategy which has been disbanded
to be replaced by the PCPI CSG
• Recruitment for PCPI members of all
CSGs – first round a success and 15
people affected by stroke now involved
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
Other routes for PPI in UKCRN
activities
• Associate Director Roger Wilson and PPI
Lead Marianne Miles
• PPI lead in all TCRN Coordinating Centres
• PPI Strategy developed and PPI Executive
Group and Working Group in place
• Plans under development for PPI in Primary
Care and Comprehensive Research
Networks
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
UKCRN approach
• Ensuring PPI involvement in all UKCRN activities should
mean that wherever UKCRN has a role in priority setting the
patient and carers voice is heard
• Establishment of common standards and approaches
• By providing training and education patient and carers will be
empowered
• Positively influence/increase public awareness around
clinical research
• Work with others – crucial e.g. JLA; INVOLVE; UKCRC
But :
The ultimate decision about which studies are funded lies
with the funders not UKCRN or the CSGs – therefore we
need to encourage funders to work in partnership with
patients too
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)
For further information
Contact: Marianne Miles
Email: [email protected]
UK Clinical Research Network (UKCRN)
Janet Darbyshire (25 June 07)