Janet Darbyshire (25 June 07) UK Clinical Research Network (UKCRN) Identifying research priorities in the UK Clinical Research Network

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

Janet Darbyshire (25 June 07) UK Clinical Research Network (UKCRN) Benefits for Patients The more rapid introduction of better treatments and care Dissemination of excellence in clinical care Increased opportunity to get involved

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

Janet Darbyshire (25 June 07) UK Clinical Research Network (UKCRN) UKCRN: FAMILY OF NETWORKS England: Topic specific Primary care Comprehensive Scotland:Topic specific Primary care Wales:Clinical Research Collaboration Cymru Thematic Research professionals Northern IrelandPrimary Care Clinical Research Network

Janet Darbyshire (25 June 07) UK Clinical Research Network (UKCRN) NATIONAL COORDINATING CENTRE(S) Patients Network Infrastructure Academic Funders Clinical Trials Units/ RDSUs Portfolio- Clinical Studies Groups Industry Funders

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

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

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

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

Janet Darbyshire (25 June 07) UK Clinical Research Network (UKCRN) Health Specific Categories Injuries Oral and Gastrointestinal SkinReproductive Health CongenitalMusculoskeletal EyeMetabolic and Endocrine Renal and Urogenital Mental Health Stroke Inflammatory and Immune Respiratory Cardiovascular Blood Infection Ear Neurological Patient Safety Cancer Genetics Cross-cutting

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

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

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

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

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

Janet Darbyshire (25 June 07) UK Clinical Research Network (UKCRN) Mental Health (MHRN) No long term Clinical Studies Groups Clinical Research Groups funded for two years to address specific questions All have consumer representatives

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

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

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

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

Janet Darbyshire (25 June 07) UK Clinical Research Network (UKCRN) For further information Contact: Marianne Miles