janet darbyshire (25 june 07) uk clinical research network (ukcrn) identifying research priorities...

Janet Darbyshire (25 June 07)UK Clinical Research Network (UKCRN)

Identifying research priorities in the UK Clinical Research Network


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.


Benefits for Patients

• The more rapid introduction of better treatments and care

• Dissemination of excellence in clinical care

• Increased opportunity to get involved


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


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


NATIONAL COORDINATING CENTRE(S)

Patients

Network Infrastructure

Academic Funders

Clinical Trials Units/

RDSUs

Portfolio-Clinical Studies Groups

Industry Funders


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


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


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


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


Health Specific Categories

Injuries Oral and GastrointestinalSkin Reproductive HealthCongenital MusculoskeletalEye Metabolic and EndocrineRenal and Urogenital Mental HealthStroke Inflammatory and ImmuneRespiratory CardiovascularBlood InfectionEar NeurologicalPatient Safety Cancer Genetics Cross-cutting


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


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


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


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


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


Mental Health (MHRN)

• No long term Clinical Studies Groups

• Clinical Research Groups funded for two years to address specific questions

• All have consumer representatives


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


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


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


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


For further information

Contact: Marianne Miles

Email: [email protected]

janet darbyshire (25 june 07) uk clinical research network (ukcrn) identifying research priorities...

Documents

ukcrn portfolio

research priorities

research participants

clinical need

clinical researchers

janet darbyshire

ukcrn cc

portfolio database slide