UKSCIRN 18 Month Strategy Plan

 

October 2011 - March 2012

 

 

1. Summary – who we are and rationale

UKSCIRN are clinically positioned and have considerable resources for developing the portfolio of research in Spinal Cord Injury. Experience and knowledge over the last eight years have enabled us to improve our funding applications and act as a champion for research towards DoH recognition of SCI as a unique patient group.

 

Our Mission is ‘to facilitate a collaborative approach to provide high quality research to help decision making in the field of spinal cord injury’.

 

1.1. UKSCIRN Identity

Our identity as a National Research Network comes from two key principles. Firstly UKSCIRN  remains autonomous through its own Committee. Secondly, research into spinal cord injury encompasses multiple disciplines and therefore it is important for UKSCIRN to position itself so that it retains its neutral position and is not aligned to one particular field of study and is able to draw upon research expertise from a range of areas (e.g. Neuroscience, surgical and musculoskeletal). Similarly UKSCIRN should not give priority to research in any particular centre or academic institution.  In this way we will continue to act as a Network for researchers based on scientific merit and benefit to patients.

 

1.2   Why the Need for Collaboration?

The number of research projects into Spinal Cord Injury which recruit patients are consistently low due to a lack of funding.  External grants are often declined because of the size of the patient population regardless of justification for lifelong costs to the NHS.  External bodies prefer to fund projects where findings may be generalised to a larger number of patients for example, a study across patient groups for pressure ulcer intervention. At any one time indications on the NIHR Portfolio confirm that there are very few funded SCI projects across the UK; currently there are only three open studies on the Portfolio which specifically relate to spinal cord injury (including the UKSCIRN funded ISCoPE study).  This is lower than any other topic. Other studies into the spinal cord are related to larger patient populations (typically MS). Remaining UKSCIRN projects on the portfolio are closed to recruitment. 

 

Current activity is listed by topic on the NIHR Portfolio and the NIHR use this as an indication of where funding needs to be encouraged. However, there is no grouped topic for spinal cord injury. Therefore SCI projects are included under other topics (typically musculoskeletal) which means the lack of funding awarded to our patient group is not acknowledged.  For this reason it is important for UKSCIRN to be the champion for change by engaging with Specialist Commissioners, the NIHR and CLRNS and to support the work of the Spinal Injury Association’s All Party Parliamentary Group and  by getting clinicians and academics from across the UK around the table (see glossary table Appendix C).   

 

2. UKSCIRN Service and Capability

 

2.1 Our Service

UKSCIRN encourage collaboration by advertising for proposals for research and other initiatives (e.g. topics for guidelines). We accept ad hoc proposals throughout the year suitable for external grant applications and for projects which already have full or partial funding. All submitted ideas are approved by our Committee through a process of anonymous peer review (see Appendix B for list of Committee members). Following approval UKSCIRN coordinate the development of collaborative applications and are named as a co-applicant for Programme Management purposes.  Backfill costs to institutions and centres for successful co-applicants will be forthcoming through grants awarded.  UKSCIRN are central to the coordination of R&D approvals and entry onto the NIHR CRN CC Portfolio to ensure NHS support costs are forthcoming. UKSCIRN monitor recruitment through uploading accrual data to the NIHR portfolio and progress through interim and final reporting.  UKSCIRN can also assist with identifying specialists and experts for participation and peer support. (See 18 Month Strategy on page 4.)  Finally UKSCIRN support dissemination through the publication of SCIence magazine and our own website. 

 

2.2  Who Else Currently Provides this Service?

We are the only Clinically based Research Network for Spinal Cord Injury which operates Nationally across all UK centres. The Spinal Foundation is currently being established at Stoke Mandeville with the primary aim of developing research to be led by its own centre with some duplication of aims for collaboration nationally and internationally.

 

2.3 Resources

Currently Buckinghamshire Healthcare NHS Trust provide us with valuable resources from the NSIC at Stoke Mandeville Hospital and a good level of support from their R&D department (who have access to CLRN funds). UKSCIRN employed Shakeeb Moosavi, PhD, as a Clinical Scientist for one year ending in September 2011 (for activity see section on background below). Dr Moosavi came to us from Imperial College London with a background in Respiratory Physiology and Neuroscience and a track record in achieving grants.  We were only able to obtain funding for one year therefore Dr Moosavi has since taken up a Senior Lectureship at Oxford Brookes University.  However Dr Moosavi retains an honorary contract with Buckinghamshire Healthcare NHS Trust to enable him to continue as a valued member of our Executive and Scientific Committee and as co-applicant on current applications for funding. Our Programme Manager, Sally Halsall (previously Henry), PhD joined UKSCIRN in 2008 from an academic background in Psychology (Brunel University) with project management experience and a masters level qualification in Planning and Managing Clinical Trials (Oxford Brookes).  Both Shakeeb Moosavi and Sally Halsall have use of shared office space at Stoke Mandeville Hospital and NHS approved laptops to enable remote access to the NHS intranet.  

  

2.4 Involvement

UKSCIRN is Chaired by Mr Martin McClelland, Consultant in Spinal Injuries at the Princess Royal Spinal Injuries Centre, Sheffield.  Whilst our Network is hosted by Buckinghamshire Healthcare NHS Trust we have no particular allegiance to SMH and represent researchers from all UK Spinal Centres and relevant institutions. UKSCIRN’s SCIence publication (launched Autumn 2011) is funded by Buckinghamshire Healthcare NHS Trust and commercial sponsorship is currently being considered. This is an annual magazine on SCI research aimed at professionals and patients and includes a compilation of UK and international studies and proposals. When funding permits, UKSCIRN will also advertise funding calls and will ensure that competitions are open and fair through a system of anonymous and standardised peer review. Support for our researchers is ongoing and we work closely with Trust R&D departments to monitor approval processes during set up and to obtain support costs and resources.

 

UKSCIRN encourages multicentre collaboration but ‘political’ representation of centres is discouraged by the nomination of Committee members on the basis of specialism or body. Membership of our Executive Committee includes clinical specialists and multidisciplinary professionals who are research active or experts who are from an academic background.  Membership also includes management for research finance and governance at Buckinghamshire Healthcare NHS Trust (Denise Watson) and charitable representation for SCI (SIT, SIA) and we continue to work to strengthen patient and public involvement.  We have recently developed our website to include a forum for patients and the recruitment of patients into trials as part of new strategies to strengthen participation.

 

We engage with Commissioners for Health alongside UK specialists as invited guest on the National Spinal Cord Injury Strategy Board.  UKSCIRN are working with Fiona Barr’s Information Management Subgroup Committee on the development of a National Database for Spinal Cord Injury. There is mutual engagement between the Boards of UKSCIRN and both MASCIP and BASCIS.

 

3. Background

The UK Spinal Injury Research Network (UKSCIRN) was launched in March 2003 to promote and encourage multi-centre clinical research and so improve the health care and well being of all patients with spinal cord injuries.  Our Network was originally funded from the Priorities and Needs framework and then through the Thames Valley Comprehensive Local Research Network (TVCLRN) until April 2011. 

 

Funding for research projects have been supported through our own funds and partner charity organisations following five bidding rounds between 2003 and 2009. Projects were advertised through the UKSCIRN and NHS websites including RDInfo and direct contact with professional groups. Submissions were peer reviewed by the UKSCIRN scientific committee.  More recently we have commenced the development of national clinical guidelines for the Management of the Tetraplegic Upper Limb.  (See Appendix A on page 7 for a list of existing and completed projects).

 

In 2009 UKSCIRN were awarded NIHR Partnership Organisation Status which meant that we became a recognised funder and projects we supported were eligible for entry onto the NIHR CRN CC Portfolio and would obtain support costs through the lead centre’s Local Comprehensive Research Network (e.g. costs for scans or research nurse time).  In 2010 UKSCIRN were successful in their application for fsf funding through the TVCLRN for a full-time Clinical Scientist.  UKSCIRN appointed Dr Shakeeb Moosavi in September 2010 whose main objective has been to work in collaboration with UK Spinal Centres to develop bids for external grant applications (e.g. NIHR, MRC).  Two months after the commencement of our Clinical Scientist UKSCIRN were given funding notice by the TVCLRN who were not  permitted to fund the direct costs of research (e.g. through our funding calls). As a result the NIHR could not justify maintaining our Partnership Organisation Status but it is something that we could re-establish once we have secured funding for this purpose.     

 

4. Current Position

Our Network can continue to operate on residue funds until March 2013. By this time UKSCIRN will have news on the outcome of our 2011 NIHR and MRC grant applications (see below). 

 

In submission

Pathway:                     NIHR Research for Patient Benefit (RfPB Competition 16)

Funds requested:        £249k research costs + £108k NHS support costs

Project Title: Evaluation of Current Standards of Renal Surveillance in Spinal Cord Injury using Low Dose CT

Duration:                     2 Years

Participating Centres:  1. NSIC, Stoke Mandeville Hospital (lead centre)

                                    2. The Princess Royal Spinal Injuries Centre, Sheffield

                                    3. Midlands CSI, RJAH Orthopaedic Hospital, Oswestry

                                    4. TBA

UKSCIRN

Commitment:               SM Co-applicant 10% FTE

                                    SH Co-applicant 10% FTE

New application submitted September 2011. Final outcome expected late March 2012.

 

2012 Submission

 

Pathway:                     MRC Efficacy and Mechanism Evaluation (EME)

Funds requested:        Total costs in excess of £1,800,000

Project Title: Bone Loss after Spinal Cord Injury: Does Prevention of Early Bone Loss with Denosumab Abolish or Delay Osteoporosis?

Duration:                     5 Years

Participating Centres:  

1. London SIC, RNOH (lead centre)

2. NSIC, Stoke Mandeville Hospital

3. Midlands CSI, RJAH Orthopaedic Hospital, Oswestry

4. Duke of Cornwall Spinal Treatment Centre, Salisbury

5. UCLH Partners Clinical Trials Unit

Status: to be submitted in 2012.

 

5.     UKSCIRN 18 Month Strategy September 2011 – March 2013

The UK Spinal Cord Injury Research Network promotes and organises multi-centre clinical research for spinal cord injured patients to improve their health care and well being.  Our earlier five year plan was based on CLRN funding for our Network and although it encouraged collaborative applications and scientific resources it did not consider the need for contingency funding for  the day to day running of our Network although we were aware that funding the direct costs for research projects would rely upon public funds (NIHR, MRC). As grant applications were unsuccessful and we are no longer funded by the CLRN, UKSCIRN now run within highly constrained funding.  The impetus within the next 18 months is to build strong ties between academic institutions and clinical centres, to communicate our service and direction to researchers and potential funders and bring patients to the forefront of decisions in line with INVOLVE policy.

 

Key Objectives and Strategies

 

1. To manage applications and projects through:

 

Providing a collaborative hub (centralised point of contact).

Ensuring deadlines are met (e.g. approvals, applications)

Liaising with Trust R&D departments for approvals and NHS support

Uploading of accrual data to NIHR portfolio

Monitoring progress of project (e.g. recruitment, time against budget)

Supporting and monitoring dissemination (including acknowledgements)

Managing payments where appropriate

The drafting of evidence based clinical guidelines in Spinal Cord Injury.

 

 

2. To build the portfolio research in SCI (of high impact, relevance and scientific merit) through:

  Putting out calls for multi-centre proposals in line with funding competition deadlines

Reviewing ‘ready made’ proposals with or without funding

Managing processes of peer review through Scientific and Executive Committee

Ensuring adequate representation and high level of expertise on UKSCIRN Scientific and Executive Committees for purposes of review, support and decision making

Identifying Steering Committees including patient involvement

Identifying experts for peer support and collaborators for applications

Providing independent review for applications prior to submission

Critically reviewing failed applications through responses from funding panels

Developing failed applications and making new applications where appropriate  

Identifying commercial funding for trials

Reviewing existing standardised processes and terms and conditions to ensure all UKSCIRN projects are eligible for portfolio entry

Bringing patients to the forefront of decisions in line with INVOLVE policy.

Working to shared goals with our charitable partners

Representing SCI research on Strategy Board for DoH strategies and government policy with mutual consideration of priorities and needs 

 

 

3. To communicate our service and direction to researchers and funders more effectively through:

Identifying commercial or charitable sponsorship for website and SCIence magazine

The publication of ‘SCIence’ magazine which will assist with dissemination and publicise issues relevant to research to spinal centres and other institutions/charitable organisations.

Developing and distributing a register of researchers by expertise 

 

 4. To establish strong ties between academic institutions and clinical centres through:

Sharing of resources including research facilities, clinical expertise and knowledge of governance for clinical trials

Encouraging nominations for academic membership on the UKSCIRN Board

Identifying clinical collaborators

Providing a clinical hub for researchers

 

5. To establish a specific topic for spinal cord injury at NIHR level through:

Continued representation of  SCI research on the Strategy Board with mutual consideration of priorities and needs 

Develop ties with charities to involve patients and be mutually supportive

Highlight barriers to research through communication (SCIence, website)

Establishing links with CLRNs across the UK 

Investigate sources of funding for topic specific networks (CLRN)

Investigate level of funding across patient categories (NIHR)

 

APPENDIX A Current Projects (see SCIence magazine for further details)

SCI17. Improving Outcome after Spinal Cord Injury by Monitoring and Reducing High Cord Pressure (ISCoPE) MARIOS PAPADOPOULOS (St Georges, London), David Choi (National Hospital for Neurology & Neurosurgery) and Kia Rezajooi (Stanmore).  Funding £58,996 commenced August 2010. Trial Coordinator funded through CLRN as support cost. 

 

SCI18. The Impact and Effect of Vertebral Artery Trauma in Spinal Cord Injured Patients   DAVID MCKEAN Funding £11,800, commenced Jan 2010. 40 recruited to SMH and initial report submitted to UKSCIRN.  Participation by SMH, Sheffield and Stanmore pending registration. Oswestry participation pending.    

 

SCI1. Lower Limb Fractures in Chronic Spinal Cord Injury.

EBBA BERGSTROM (SMH), Prof Frankel. SMH & Oswestry. Currently disseminating(eg. ISCOS)Interim report submitted and circulated.  Final report now requested.

 

SCI2. The impact of a Stoma in Bowel Management after SCI.  MAUREEN COGGRAVE (NSIC, Southport, Stanmore, Pinderfields, Salisbury). Currently Disseminating (eg spinal cord). Analysis complete.  Final report requested. 

‘Take home message: A stoma improves quality of life for individuals with SCI who have significant bowel management difficulties; information regarding stoma formation and its outcomes in SCI individuals should be provided early after injury to facilitate informed decision making. ‘ Dissemination ongoing.

 

Completed Projects

SCI19 Understanding the Well-being and Care of Persons with Spinal Injury in an Isolation Ward as a result of Pressure Sores. Commenced  March 2010. BRETT SMITH (L’Brough),  Paul Kennedy (SMH), Helen Smith (Stanmore). Funding £6,358. Final report submitted and circulated Dec 2010 also in newsletter from the Peter Harrison Centre for Disability Sport, Issue 8 Winter 2010/11.

 

SCI8 Changes in Wheelchair Provision to People with Spinal Cord Injury in the UK. LONE ROSE. All UKSCIC apart from Rockwood. Funding £5000 (+£18,000 David Tolkien fund) Commenced 2006.  Final report submitted and circulated. Dissemination ongoing (e.g. MASCIP).

  

APPENDIX B  

 

Membership of UKSCIRN Executive and Scientific Committees

  

BASCIS–

Mr Pradeep Thumbikat  MSc, FRCS (Glasg)

Dr Fred Middleton MA FRCP

Professor Mike Craggs PhD CSci MIPEM

 

MASCIP-            

Dr Firas Sarhan - Buckinghamshire New University and Staff Nurse, SMH

                            

Universities -

Professor Hans Frankel OBE MB FRCP – Imperial College (Scientific Committee only)
 

Professor Stephen Eisenstein MB, BCh PhD, FRCS (Edin)

  - Representing Spinal Surgery, RJAH & Keele University

 

Dr Anne-Marie Bagnall PhD
  - LeedsMetropolitan University, Faculty of Health

 

Professor Jonathan Cole D.M., FRCP.

 -  Universities of Southampton and Bournemouth and Salisbury Spinal Centre

 

Professor Paul Kennedy DPhil FBPsS

- University of Oxford

 

Mr Wagih El Masri FRCS Ed 

-  Hon. Professor, Keele University

 

Dr Shakeeb Moosavi, PhD

- Faculty of Health and Life Sciences, Oxford Brookes University

 

Charities -

SIA –

Dr Roger Fitzwater (Spinal Injuries Association - Executive Committee only)

 

SIT –

Brian Carlin, ASPIRE (Spinal Injuries Together - Executive Committee only)

           

Finance Officer-        

Ms Denise Watson (Executive Committee only)

 

Programme Manager -

       Sally Halsall, PhD (Executive Committee only)

           

Co-opted other members -    

Mr Martin McClelland MBChB,BAO,FRCS (Chair UKSCIRN)

- Consultant in Spinal Injuries, Princess Royal Spinal Injuries Centre, Sheffield

      

 

 

 

APPENDIX C – Glossary

 

BASCIS

British Association of Spinal Cord Injury Specialists

CLRN

Comprehensive Local Research Network

FSF

Flexibility and Sustainability Funding

FTE

Full Time Equivalent

MASCIP

Multidisciplinary Association of Spinal Cord Injury Professionals

MRC

Medical Research Council

MS

Multiple Sclerosis

NIHR CRN CC

National Institute for Health Research Clinical Research Network Coordinating Centre

NSIC

National Spinal Injury Centre

NSCISB

National Spinal Cord Injury Strategy Board

R&D

Research & Development

RfPB

Research for Patient Benefit

RJAH

Robert Jones & Agnes Hunt Orthopaedic Hospital

RNOH

Royal National Orthopaedic Hospital NHS Trust

SCI

Spinal Cord Injury

SIA

Spinal Injuries Association

SIC

Spinal Injury Centre

SIT

Spinal Injuries Together

SMH

Stoke Mandeville Hospital

UCLH

UniversityCollege London Hospital