1. UK Clinical Research Network (UKCRN) UK Clinical Research Network Maxine Stead PhD UKCRN Assistant Director – Clinical Trials

2. UK Clinical Research Network (UKCRN) 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 Alzheimer's disease (now Dementias and Neurodegenerative Disease) Stroke Cancer Mental Health  Clinical Research Network model (UKCRN)  UK Clinical Research Collaboration (UKCRC)

3. UK Clinical Research Network (UKCRN) 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

4. UK Clinical Research Network (UKCRN) What is the UKCRN? UKCRN will consist of a managed set of Clinical Research Networks to facilitate the conduct of randomised trials of interventions (including prevention, diagnosis, treatment, and care) and other well designed studies Research projects funded by both commercial and non-commercial organisations will be incorporated 6 initial priority areas - cancer, mental health, medicines for children, diabetes, stroke and dementias and neurodegenerative disease Future intention to extend UKCRN to cover full spectrum of disease and clinical need Aim: to provide a world-class health service infrastructure to support clinical research and to make clinical research part of routine care

5. UK Clinical Research Network (UKCRN) Organisational Structure of UKCRC/N

6. UK Clinical Research Network (UKCRN) Role of UKCRN Coordinating Centre  National coordination of UKCRN activities  Performance management of Topic-Specific Coordinating Centres  Financial management of UKCRN  Links with UKCRC  Development and provision of national systems and approaches to trial development and management  Conduit for addressing barriers to trials at a national level  Central team of ~30-35 staff with leads for different workstreams

7. UK Clinical Research Network (UKCRN) Organisational Structure of UKCRC/N

8. UK Clinical Research Network (UKCRN) Topic Specific Network Directors Mental Health Director Prof Til Wykes Cancer Director (acting) Prof Rick Kaplan Medicines for Children Director Prof Ros Smyth Diabetes Director Prof Des Johnston Stroke Director Prof Gary Ford DenDRoN Director Prof Martin Rossor UKCRN National CC Co- Directors Prof Janet Darbyshire Prof Peter Selby

9. UK Clinical Research Network (UKCRN) Role of Topic-Specific Coordinating Centres  Portfolio development  Management of Research Networks  Performance management of Research Networks  Provision of topic-specific training  Coordination of consumer involvement  Links with relevant trials units  Main point of contact with UKCRN Coordinating Centre

10. UK Clinical Research Network (UKCRN) Benefits of the UKCRN  Improved national coordination of clinical research  Provision of national systems and advice structures  reduction in duplication of effort  National coordinated approach to trial development and trial portfolios  Increased profile of research  Improved trials  benefits for patients

11. UK Clinical Research Network (UKCRN) Development of research portfolios - National Clinical Studies Groups  Remit to develop a balanced portfolio of research studies that address uncertainties in patient care  Multi-disciplinary membership, transparent appointment  Involvement of patients, carers and the public in:  prioritisation of questions  development of study methodology and outcomes  maintaining an overview of the portfolio and identifying gaps  study overview and management  dissemination of results  Links with funding bodies, NICE, James Lind Alliance  Links with international groups to enable questions in rarer conditions to be answered

12. UK Clinical Research Network (UKCRN) CSGs in cancer  Bladder Cancer Clinical Studies Group  Brain Tumour Clinical Studies Group  Breast Cancer Clinical Studies Group  Colorectal Cancer Clinical Studies Group  Complementary Therapies Clinical Studies Development Group  Consumer Liaison Group  Gynaecological Cancer Clinical Studies Group  Haematological Oncology Clinical Studies Group  Head and Neck Cancer Clinical Studies Group  Lung Cancer Clinical Studies Group  Lymphoma Clinical Studies Group  Melanoma Clinical Studies Group  Palliative Care Clinical Studies Development Group  Primary Care Clinical Studies Development Group  Prostate Cancer Clinical Studies Group  Psychosocial Oncology Clinical Studies Development Group  Renal Cancer Clinical Studies Group  Radiotherapy Clinical Studies Group  Sarcoma Clinical Studies Group  Testis Cancer Clinical Studies Group  Upper GI Cancer Clinical Studies Group

13. UK Clinical Research Network (UKCRN) CSGs in cancer  Bladder Cancer Clinical Studies Group  Brain Tumour Clinical Studies Group  Breast Cancer Clinical Studies Group  Colorectal Cancer Clinical Studies Group  Complementary Therapies Clinical Studies Development Group  Consumer Liaison Group  Gynaecological Cancer Clinical Studies Group  Haematological Oncology Clinical Studies Group  Head and Neck Cancer Clinical Studies Group  Lung Cancer Clinical Studies Group  Lymphoma Clinical Studies Group  Melanoma Clinical Studies Group  Palliative Care Clinical Studies Development Group  Primary Care Clinical Studies Development Group  Prostate Cancer Clinical Studies Group  Psychosocial Oncology Clinical Studies Development Group  Renal Cancer Clinical Studies Group  Radiotherapy Clinical Studies Group  Sarcoma Clinical Studies Group  Testis Cancer Clinical Studies Group  Upper GI Cancer Clinical Studies Group

14. UK Clinical Research Network (UKCRN)

15. Involvement of patients and the public  UKCRN Patient and Public Liaison Lead – Marianne Miles  Topic Research Network Leads  Development of common standards and approaches to involving consumers in UKCRN activities  Membership of Clinical Studies Groups  Establishment of Consumer Research Panels  Provision of training and support  UKCRC – increasing public awareness of research

16. UK Clinical Research Network (UKCRN) Summary  UKCRN will provide infrastructure to support clinical research that answers current uncertainties in healthcare  Links with James Lind Alliance important  Development of Clinical Studies Groups provide another forum to identify questions  Links with patients and the public are fundamental  Exciting times ahead!