Lesley Hall How Research Networks can support

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How research networks can
support study set-up and delivery
Dr Lesley Hall
Non-Commercial Portfolio Manager
26 September 2011
www.dendron.org.uk
www.dendron.org.uk
Outline
• Provide some background to the types of
infrastructure support provided by National Institute
for Health Research (NIHR) to allow high-quality
research to take place in the NHS
• Describe how DeNDRoN fits into this structure and
how we support:
– Non-commercial studies that are eligible for NIHR Clinical
Research Network (CRN) support and inclusion in the NIHR
CRN Portfolio
– Industry studies that apply for adoption to the NIHR CRN
Portfolio
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NIHR Infrastructure
• NIHR provides infrastructure and support in various
ways – Some examples are:
– Biomedical Research Centres and Units (BRUs/BRCs)
– Experimental Medicine Facilities
– Collaborations for Leadership in Applied Health Research
and Care (CLAHRCs)
– Patient Safety & Service Quality Research Centres (PSSQs)
– Research Centres
AND
– Clinical Research Networks (CRNs)
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NIHR Clinical Research Network (CRN)
• The NIHR CRN includes networks which co-ordinate studies
for specific conditions – often referred to as Topic Clinical
Research Networks (TCRNs):
–
–
–
–
–
–
Cancer
Dementias and Neurodegenerative Diseases
Diabetes
Medicines for Children
Mental Health
Stroke
• Also a Comprehensive Research Network to encourage
research in all areas other than the specific conditions above
• A Primary Care Research Network focusing on health areas for
which primary care has particular responsibility
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NIHR DeNDRoN
• NIHR DeNDRoN (Dementias & Neurodegenerative Diseases
Research Network) is a managed network working across the
following areas:
– Dementias
– Parkinson’s Disease
– Motor Neurone Disease
– Huntington’s Disease
– Other neurodegenerative diseases
• We offer effective support through an experienced and
flexible workforce of dedicated and specialist staff
• Provide access to a broad geography of NHS patient
populations
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DeNDRoN - Supporting research
• At a national level DeNDRoN has a Co-ordinating
Centre that directs the support required for studies:
– Through 7 DeNDRoN Local Research Networks (LRNs) in
England:




East Anglia
North East
North Thames
North West
 South Coast
 South West
 Thames Valley
– Working with other parts of the Clinical Research Network
(eg, other topic specific networks, PCRN or the
Comprehensive CRN) to co-ordinate support for studies
– Linking with relevant research networks in Scotland, Wales6
and Northern Ireland
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DeNDRoN support throughout the life
cycle of a non-commercial research study
Bright idea
Funding
Set-up
Pre-funding
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Meeting
recruitment
targets
Post-funding
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Development of non-commercial studies
• Support for development is directed at DeNDRoN coordinating centre by the Portfolio Development
Manager through specific output-focused activities:
– Clinical Studies Groups
– Task Forces
– Writing Groups
• Patient and Public Involvement (PPI) is supported by
a dedicated PPI Co-ordinator providing expert advice
in developing a PPI plan to support applications
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Set-up and Delivery
Non-commercial studies
• Once funded each non-commercial study eligible for NIHR
CRN support is assigned a Lead Network to take responsibility
for facilitating the set-up of studies
• The role of the LNS is to:
– work with the Chief Investigator to map the service
support required across the CRN
– Provide access to our experienced workforce within the
LRNs and other parts of the CRN where necessary
– Offer expertise with regard to recruitment
– Help to identify additional sites where required
– Help resolve problems to aid the speedy set-up of studies
so that sites are ready to recruit as soon as NHS
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Permissions are in place
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Set-up and delivery – industry studies
DeNDRoN facilitates the set-up and conduct of clinical research
in collaboration with pharmaceutical, technology and clinical
research organisations by:
• Performing study and site level feasibility
• Facilitating the adoption of studies to the NIHR CRN portfolio
• Identifying additional sites
• Providing access to a workforce experienced in complex,
interventional and observational clinical research
• Ensure studies are delivered on time and to the recruitment
targets set
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DeNDRoN Support ‘on the ground’
• Our LRN managers can discuss the logistics of doing studies and
are proactive in highlighting potential study challenges as well as
suggesting possible solutions
• We can help with identifying and screening participants
• Staff experienced in working with our specific patient groups can
discuss studies and take consent
• We can provide research nurses/Clinical Study Officers to do
selected activities which do not require a doctor
• We can support investigators with NHS Permissions by
contributing to Site Specific Information (SSI) forms
• We can help with publicising studies
• We can train research staff to work on Portfolio studies
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• We can help with recruitment of research staff for new sites
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Useful DeNDRoN Contacts
Portfolio Development Manager - Denise Wilson
denise.wilson@dendron.org.uk 0191 248 1347
PPI Co-ordinator - Terry McGrath
terry.mcgrath@dendron.org.uk - 020 7242 3311
Non-Commercial Portfolio Manager – Lesley Hall
Lesley.hall@dendron.org.uk - 0191 248 1328
Industry Manager – Judith Hedley (interim)
industry@dendron.org.uk – 0191 248 1318
Management Information Systems Analyst – Kris Beicher
Kris.beicher@dendron.org.uk – 0191 248 1346
For contact details for all Local Research Networks see:
DeNDRoN website: http://www.dendron.org.uk/index.html
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