Research and Development

Annual Report 2013-2014

Prepared by Jane Carter and Janine McCaulder-Ojeda R&D office

Royal National Hospital for Rheumatic Diseases NHS Foundation Trust

CONTENTS 1.0 Introduction - Overview of the year 1.1 Research Infrastructure 1.2 External Income

2.0 Research Projects 2.1 NIHR portfolio projects 2.2 Non-NIHR projects 3.0 NIHR Portfolio recruitment 13/14 3.1 Non portfolio recruitment 13/14 4.0 Financial Summary 4.1 Grants Awarded from Charities/Pharmaceutical co 4.2 Commercial Clinical Trials 4.3 Western Comprehensive Local Research Network

5.0 Research Dissemination 6.0 Future Plans to build research 7.0 Research Governance

8.0 Research Support Group meetings 9.0 Impacts of Research Bath 9.1 Bath Centre for Pain Services 9.2 Connective Tissue Disease 9.3 Spondylarthropathy 10.0 National Representation 11.0 Progress against annual objectives 13/14

12.0 Pictorial Representation of RNHRD Research Themes Appendices 1 – List of projects ongoing during the year by specialty 2 – External Funding 13/14 3 – Publications 13/14 4 – Key Critical Indicators 5 - National Representation

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1.0 Introduction – Overview of the year

Research at the Royal National Hospital for Rheumatic Diseases continues to thrive with successes in

2013/2014 including an increase in the number of research studies, recruitment of research participants and

a growth in research infrastructure. The Trust continues to attract research awards from charities and non-

commercial sources and has expanded its commercial sponsored research.

This report provides a summary of the research across the Trust in 2013/14 with a list of studies provided in

Appendix 1 which includes details of any outputs generated from the study. Appendix 2 includes a list of

external grants awarded in 2013/14 together with RNHRD Charitable Funds grants awarded to researchers

and NIHR research capability funding (RCF). A list of published academic papers and research presentations,

both national and international, is provided in Appendix 3. The Key Critical Indicators detailed in Appendix 4,

summarise key activity during the year, provides a list of research active staff, external funding etc and offers

a longer term picture of R&D with comparative figures to the previous two financial year’s achievements.

1.1 Research infrastructure – Main activity in 2013/14 has included:-

Following 17 years as Research and Development Director and Chair of the R&D Committee

Professor Neil McHugh stepped down following his substantive appointment at the

University of Bath as Professor of Pharmacoepidemiology. The post remained vacant from

October to April with the appointment of Dr Raj Sengupta to the post.

The establishment of a dedicated research unit on the second floor of the hospital includes a

multi-person office housing research nurses, research fellows, database staff and the R&D

office. Now on the second floor are the offices of the R&D Director and research active

consultants together with a research clinic room. Many of these staff were previously

housed in the Bath Institute for Rheumatic Diseases (BIRD), which worked well, but the

opportunity for greater integration and better visibility and communication within the

hospital has proved very successful. An open tea and cake afternoon at Christmas welcomed

staff from all areas of the trust to come and view the new office and find out more about

research at the Min.

I-Pad project - in its initial pilot phase, this Pfizer funded project has brought tablet

technology into the outpatient area to enable patients to complete electronic questionnaires

about their Ankylosing Spondylitis which is subsequently available electronically to the

clinician at their consultation. Further work is required and funding is being sought to roll

this out to all of the trust services during 14-15.

Alongside the I-Pad project updated scanning software, to enable more efficient data capture

of paper based questionnaires and outcome measures, has been purchased. The database

team have significantly increased the number of outcome measures available in a scanned

format to implement efficiencies across the trust services.

Redeployment of a Health Care Assistant (HCA) from the neuro-rehabilitation service worked

very well and enabled the research nurses to be supported during patient visits with the HCA

meeting and greeting, taking patients to different areas of the trust for different procedures

and weighing, measuring height, guiding questionnaire completion etc as well as some data

entry post visit. Following the resignation of the member of staff the position has been

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vacant partly due to a lack of funding but it is hoped that the post can be re-instigated in 14-

15 with CRN funding.

EDGE software was rolled out to researchers early in 2013/14 and is a regional/national

system for capturing the number of research participants and visits enabling more accurate

and real time reporting of recruitment.

Ongoing discussions are being held with the Bath Institute for Rheumatic Diseases (BIRD), a

charity located opposite the hospital, which has very close links with the hospital for research

and diagnostic services. The charity, which is dedicated to supporting research in bone and

joint diseases, is re-locating and working with the Trust to ensure the continuity of the

sample processing, laboratory, bio-bank and support service provision for researchers.

The National Institute for Health Research has completed a major re-structure to combine

the previous five Topic specific research networks (including primary care) with the

Comprehensive Local Research Networks (CLRNs) to form 15 Clinical Research Networks

based on the same geography as the Academic Health Science Network divisions. This has

resulted in a significantly reduced geographical area for the West of England (formerly

Western CLRN) with around half the number of member organisations. The new structure is

emerging and R&D staff and researchers will continue to work with the new team as the

network develops.

Significant effort has been made to ensure patients who wish to, can sign up to being

contacted about relevant research opportunities which they may consider volunteering for.

The use of the new check in screens for outpatients is being used to capture this data. This

registry of patients willing to receive patient information sheets on studies relevant to their

condition can be used to identify potential patients for a study and is extremely valuable in

ensuring patients are given the opportunity to take part in research – a core aim of the NHS

Constitution.

To accompany the above initiative a new research leaflet for patients has been developed,

with the assistance of patients, to explain what might be involved when participating in

research.

International clinical trials day was celebrated with nurses offering patients the chance to

participate in a randomised control trial of different types of chocolate, with posters and a

stand in the foyer. As part of the day Twitter was utilised to promote research successes and

an article appeared in the Bath Chronicle.

The research nurses have continued to promote research more widely amongst Trust staff to

foster better working relationships and collaboration.

Research nurses have been working on improved communication with the AS groups to raise

the profile of research and current studies at their introductory course sessions.

Dr Eva Lange, a visiting research fellow from New Zealand joined the trust and has been

conducting a project with patients who have Myositis to validate a commonly used

performance measure – the Myositis Muscle Dysfunction Scale.

Prof Neil McHugh is leading a major NIHR Programme grant application, for circa £2 million,

which has reached the second round and a decision will be made in 2014/15. The

programme of work involves 15 collaborators and is to study patients who may develop

psoriatic arthritis following a diagnosis of psoriasis.

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1.2 External Income

Total income to the Trust generated by research activity in 2013/2014 was circa £971,909 compared to

£1,149.00 in 2012/2013. This includes funding from grants/commercial trials and support funding. The

completion of the NIHR i4i grant part way through the year accounted for approximately half this decrease.

The Trust is a member of the Western Comprehensive Local Research Network which oversees healthcare

research across the region and is the regionally based provider of NIHR R&D support funding to research

active Trusts. Funding from WCLRN was just less than half a million pounds (£495,743). Department of

Health Research Capability Funding of £78,413 was received and the remainder was grant income £363,235

and commercial trial income of £34,518.

2011-2012 2012-2013 2013-2014

Total Research income £1,125,977 £1,149,00 £971,909

Research Network Funding

£505,053 £461,844 £495,743

Research Capability Funding

£20,924 £103,023 £78,413

R&D grant income

Circa £600,00 £446,087

£363,235

Commercial Trial Income

Not available

£34,161

£34,518

2.0 Research Projects (Full list attached in Appendix 1)

2.1 NIHR Portfolio Registered Projects

The Trust has been able to increase the number of studies on the NIHR research portfolio in 2013/14. In total

there were 37 projects registered on the portfolio for the year with 29 projects actively recruiting. This

represents a 27% increase from 2012/13 where only 22 projects were actively recruiting (31 projects in total).

Additionally, the Trust has been able to diversify its portfolio to include bone and joint disease and

hypermobility research and following set up in 13/14, a project recruiting children with Chronic Fatigue

Syndrome will commence in early 14/15. Furthermore, the Trust has made progress in increasing its portfolio

interventional studies from 2 in 2012/2013 to 7 in 2013/14 which attract a higher level of support funding

(see Figure 2).

2.2 Non-NIHR Portfolio projects

Those research studies which are not on the NIHR portfolio include smaller pilot projects, those funded by

Charitable funds, secondary data analysis, student projects and some commercial trials. While there is a

priority for the Trust to expand its NIHR portfolio, the number of non-Portfolio projects has risen this year to

25 giving a total of 62 projects overall which is a rise of 35% from the previous two years.

The associated impacts generated from a particular research project such as a publication, conference

presentation or external grant award etc are included in the Appendix 1.

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Figure 1 - RNHRD Number of

active NIHR Portfolio and Non-

Portfolio projects

Figure 2 – RNHRD Number of active NIHR Portfolio interventional studies

3.0 NIHR Portfolio recruitment for 2013/2014

A major source of funding for the Trust research is from the NIHR via the WCLRN. This funding is broadly

based on a formula but with a needs based assessment per Trust also included. The formula takes account of

the number of new patients recruited to studies and reported to the NIHR Portfolio and the type of study eg

Interventional (Band 3) Observational (Band 2), or large studies >10,000 patients (Band 1). The RNHRD

portfolio contains mainly Band 2 studies with 6 active Band 3 and one Band 1 (see Figure 3 for breakdown).

Notionally an amount is allocated for each patient recruited with approximate funding weighted at 1:3:14

(band 1-3).

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Figure 3 – RNHRD NIHR portfolio studies by Banding 2013/2014

The Trust continues to improve on its recruitment of new patients to portfolio registered research studies.

744 participants were recruited in 2013/14 (See Figure 4) with the Trust exceeding the recruitment target of

700 set by the Western Comprehensive Local Research Network. The largest number of new patients

recruited was in the Spondylarthropathy specialty in 13/14. This included a high recruiting study, ADIPSA 1,

which recruited both Psoriatic arthritis and Ankylosing Spondylitis patients. A full breakdown of recruitment

per specialty is shown in Figure 3 below.

Following changes to the NIHR Network no recruitment target for individual trusts has been set for 2014/15

but as part of the annual plan, the R&D Committee have suggested the Trust work to a target of 775-800.

The NIHR aims to increase recruitment continually and regional performance is used to calculate the

proportion of national budget the CRN West of England will receive. NIHR portfolio recruitment figures are

monitored monthly by the R&D Committee and Clinical Studies Management Group in order to ensure

appropriate action is taken to address any recruitment issues and researchers are encouraged to register

recruitment on the EDGE database system.

Pressure areas which make it difficult to fully achieve the potential for research recruitment this year have

included only having one not two research fellows for 6 months; not having consent from all patients to

contact them with information and the time required by nurses/clinicians to follow up patients already on

existing research studies – these can last for several years and no additional NIHR funding is provided based

on number of patients in follow up. Continued efforts must be made to ensure that recruitment is

maximised and set targets are reached as the Trust remains at risk of losing funding in future years. All

recruits are reported either directly by RNHRD staff or via co-ordinating centres for multi-centre studies. The

roll out of the research programme EDGE across the Trust enables the R&D office and the R&D Committee to

monitor more accurately real time recruitment figures on a monthly basis and deal with any issues that

prevent effective recruitment but further work to ensure data is entered in a timely way is required.

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Figure 4 – NIHR portfolio recruitment by specialty

Figure 5 – RNHRD Portfolio Recruitment three year period

3.1 Non-NIHR Portfolio Research Recruitment for 2013/2014

Non-portfolio research also continues to thrive at the Trust and 25 projects were registered in 2013/2014

with circa 151 patients recruited to these studies (Appendix 1 provides a list of non-portfolio studies)

Projects included small pilot studies, secondary data analysis and some student projects which are not

eligible for portfolio adoption due to the funding source. Although there is increased emphasis to focus on

increasing our portfolio, it is very important to continue to support these smaller projects in order to develop

new researchers and in the past some small scale studies have led to successful external grant application.

Until recently it has not been a requirement from the local research network to collect information on non-

portfolio recruitment, however we are now required to collect this information via the EDGE database

system.

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Figure 6 – RNHRD non-portfolio recruitment 13/14

4.0 Financial summary – See also Appendix 2

The Trust receives funding from 3 main sources for research:

4.1 Grants awarded from Charities/Pharmaceutical companies for investigator initiated research

Successful grants from charities in 13/14 was £1,659,662.17. These include all grants which staff acted as

main or co-applicant. Much of this funding is hosted by the Trust but where the main applicant is also

employed by another organisation only a proportion of the income will be received by the Trust eg for a

particular member of staff’s time or a sub-project. Most grants are time limited and provide income between

1-3 years. Details of the grants awarded are listed in Appendix 2.

New External grants awarded 3 year period

2011-2012 2012-2013 2013-2014

£2,073.086 £446,087

£1,659,662

4.2 Commercial clinical trials

Commercial clinical trials activity at the Trust continues with 7 trials registered in 2013/14 (two closed early

as no suitable patients consented) with a further five trials in set up at the end of the financial year. It is

hoped that commercial activity will continue to grow and we are anticipating a 50% increase in the number of

commercial projects in 2014/2015.

Income from commercial trials in 2013/14 was at a similar level to 2012/13 at £34,518 (2012/13 = £34,161).

Given the Trust’s excellent national and international reputation for research, the Trust has a high success

rate in a nationally competitive environment for being selected by commercial companies as a participating

site. The Clinical Trials Nurse Manager and the R&D Manager continue to work on capacity and resource

planning to ensure that the Trust is able to increase its commercial clinical trials portfolio and match the

staffing/resources required. The Clinical Studies Management Group which meets monthly also reviews

potential future trials and monitors the progress of on-going trials.

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Figure 7 – RNHRD Commercial Studies over three year period.

4.3 Western Comprehensive Local Research Network (from April 2014 this will be the Clinical Research

Network , West of England)

For any Trust to be able to set up and carry out research there needs to be an appropriate infrastructure and

department staff to support it who are able to understand the complexities of research and provide the

necessary tests, imaging, pharmacy and support services. The funding for much of this is not through

individual grants but support funding from the NIHR, which recognises this need. It enables trusts to

collaborate on multi-centre trials as well as initiating research, enabling patients to have opportunities to

participate in trials and the development of healthcare knowledge in the UK.

Western CLRN provided £461,843 Delivery and Research Management and Governance funding with a

further £33,900 of Research Capability Funding (RCF) in 2013/14 to enable all NIHR Portfolio registered

projects to take place in the organisation. The total represented a flat budget on the previous year but with

the additional RCF. The level of funding is based on the number and type of projects on the NIHR’s Portfolio,

recruitment of patients to research trials and the on-going needs of the trust. Use of the funding is split into

time for clinical/research staff time, costs related to projects (includes extra imaging, blood tests, outpatient

appointments etc) and investment in infrastructure to allow the Trust to grow the number of trials/projects.

5.0 Research Dissemination

The Trust continues to encourage researchers to attend both national and international conferences in order

to showcase the results of their research and promote the Trust as a centre of excellence. In 2013/2014 10

applications were received requesting funding of up to £600 to cover Registration, travel and accommodation

and £3259.50 was awarded from Charitable Funds for this purpose. As well as presenting at conferences

results are disseminated via academic journal papers, newsletters for patients and in the media. A full list of

publications and presentations in 2013/14 (by research theme) is contained in Appendix 3. The level of all

publications (including published papers, book chapters, conference posters/abstracts and oral presentations

was circa 24% higher than in 2012/13 with 124 total publications, compared to 100 in the previous year. A

full breakdown of publication type by specialty is included in the key critical indicators in Appendix 4.

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Figure 8 – Total publications by specialty for 2013/2014

6.0 Future plans to build research

During 2014-15 the Trust will be creating facilities to process samples, extract DNA, store

samples, including bio-banks, and prepare samples for transportation either at ambient

temperature or cooled using dry ice. This is as a result of the change in facilities available at

BIRD which currently provide the Trust with these services.

Funding will be sought to develop a mobile app for the Trust to assist patients and potential

patients identify research projects and trials that are ongoing at the trust and which they

may wish to take part in, enabling them to ask their clinician at their next appointment.

The use of tablets to collect Patient Reported Outcome Measures has been piloted for AS

patients and a further funding application will be submitted in 2014-15 to RNHRD Charitable

trustees to fund staff to develop the system which enables real time data to be available at

consultations to be rolled out to more Trust services. Funding will be sought for IT expertise

and for the database team to work towards all outcome measures being either completed

electronically or completed in paper format which can be scanned.

The two clinical research fellows will have hot-desk space within the Research Unit to

enable them to have greater communication with the research nurses and team whilst

carrying out their research duties.

Additional database support is required following the resignation of the previous Band 2

administrator in November 2013. Funding will be sought within the RNHRD Charitable

funds application for PROMs and to other external funding sources.

2013-14 saw the Trust becoming a recruitment site for an NIHR Portfolio research project in Bone

disease for the first time and setting up a paediatric Chronic Fatigue Syndrome/ME project which has

been accepted onto the NIHR Portfolio and which will recruit from 2014-17. These are two research

areas where expansion to further projects will be encouraged during 2014-15.

The Bath Centre for Pain Services joined other pain services within the region to become accepted as

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a Health Integration Team (HIT) which is part of the NIHR funded CLARHC (Collaborations for

Leadership in Applied Health Research and Care) which aims to create healthier environments, and to

improve care for chronic health conditions.

Funding to be identified to appoint a research Health Care Assistant.

External funding has been granted to appoint a Research Fellow to work with Dr Sengupta to develop

new grant applications, complete data analysis and write up of existing research projects and to

identify new funding sources and research questions.

Work will continue to grow the number of commercially funded clinical trials and widen the disease areas which these are currently conducted.

Work will be required to integrate R&D services with the RUH prior to and following acquisition

The R&D office will work with researchers to achieve the Department of Health benchmark of

granting NHS permission for projects and recruiting patients to clinical trials within 70 days of

receiving an application. The DH intend to introduce financial penalties for Trusts who continuously

do not achieve this benchmark.

7.0 Research governance

The Trust R&D committee continues to meet monthly and oversees and approves new research projects being carried out on patients of the Trust. Depending on the type of project, most research at the hospital requires ethical approval from a Health Research Authority NHS Research Ethics Committee (REC) and NHS Permission, performed by the R&D department using nationally agreed standard assessment criteria. This ensures that the project does not put patients at risk, will produce useful results and has appropriate funding which does not put the hospital at risk financially. The R&D department have been working to improve information and systems within the department and available to researchers during 2013/14 and have completed the following:-

Introduction of new standard operating procedures on research finances, this includes SOPs on Applying for a Grant – including the process for external grant applications, RNHRD Charitable Funds and Research Capability Funding and Grant Management,

Introduction of a Grant register of all applications submitted and outcome of applications. This is reported to the R&D Committee on a quarterly basis.

Information leaflet to help researchers with external grant costs

Research governance handbook

Research Governance Audit performed to ensure Chief/Principal Investigators are adhering to procedures and good practice

Revised R&D Committee terms of reference.

8.0 Research Support Group Meetings

A number of specialty groups meet to discuss on-going and potential research projects and related issues. These groups include the following that are known to the R&D team:

CRPS group (Chair Prof Candy McCabe) - Monthly meetings for CRPS and related conditions which are attended by multi-disciplinary staff members from the Trust and University of Bath and University of the West of England.

Bath Spondylarthropathy Research Group (BSpARG) (Chair Dr Ellie Korendowych) - Monthly meetings, group includes doctors, nurses, database manager, scientists and the R&D manager. Alternate months have research presentations and business meetings.

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The CTD Research Group, (Chair Dr John Pauling) - Monthly meetings with a twice yearly Combined Bath/Bristol CTD meeting.

Clinical Research Nurses (Chair Sarah Cole) - Monthly meeting to review new projects, ongoing trials, develop standard operating procedures and other relevant issues.

9.0 Impacts of Research The report details the publications and presentations resulting from the research carried out at the Trust (Appendix 3) but one of the most important results of research is the effect they then have on treatments and improvements in patient care. These are often not seen until at least a year after the project has been completed or are a result of several discoveries combined, so it can be difficult to attribute them to individual projects. Other impacts include the increased knowledge and expertise of specialist clinicians feeding into national policy/guidelines and specialist interest groups where improved combined knowledge can result in treatment improvements on a wide scale. Several examples of impacts in different areas of the Trust are included here: 9.1 Bath Centre for Pain Services

Dr Jeremy Gauntlett-Gilbert and Professor Candy McCabe were joint applicants on a successful application to become a Health Integration Team (HIT) with Bristol Health Partners. This is a collaboration of pain services and pain research centres across Bristol and Bath aimed at service development and translation of research into clinical practice. This is a prestigious award that comes with some infrastructure funding that allows clinical change in the region to be driven by the best evidence over a three year period. There is no equivalent, recognised pain research grouping outside of London.

Dr Louise Tarrant has been conducting a systematic literature review on pain in older adults, as part of a British Pain Society working party. This work will be adopted by the British Pain Society as national guidance, and it is hoped that it will then be incorporated into NICE guidance on the topic.

9.2 Connective Tissue Disease

Previous RNHRD research has helped to identify better ways of evaluating and managing Raynaud’s phenomenon and systemic sclerosis. This work was carried out by Dr John Pauling and during the last year he has been fostering collaborative links with other scleroderma centres worldwide.

9.3 Spondylarthropathy - iPads Dr Raj Sengupta is an expert in the field of Spondylarthropathies and has spear headed the project to get iPads for patient use in the outpatients department. These iPads are used to record important clinical information for AS patients such as patient outcome measures. This information will play an important role in guiding research in the future. 10.0 National Representation Many of our clinicians involved in research at the Trust are experts in their field and contribute to both local and national organisations either as representatives or in advisory roles. Many also advise on and peer review academic publications. A list of the organisations they are members of or advise on are listed in Appendix 5

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11.0 Progress against annual objectives 2013-14

OBJECTIVE OUTCOME

Recruitment of additional Research Nurse to take on more

NIHR portfolio and commercial studies

Objective met - Recruited and started in May 2013

Recruitment of Research Database Coordinator Objective met - Recruited and started in July 2013 (AS).

Resigned Dec 2014 to move to post in IM&T

Recruitment of Research Administrator Objective met – recruited and started on 1st

April 2013

– Resigned November 2014 to move to post in PALS

Delivery of NIHR Portfolio recruitment target of 650 as per

Western Comprehensive Local Research Network (WCLRN)

business plan

Objective met. Final recruitment figure for 2013/14

was 744.

Deliver the R&D income budget for R&D This includes

WCLRN, Research Capability Funding (RCF) and

grant/commercial income. Total budget = £1.2m

Fall in income received to £971,909. This was partly

due to end of NIHR i4i grant in 2nd

quarter.

Continue to increase the volume of actively recruiting

research projects on the NIHR Portfolio in particular

interventional studies. Project target = 30+.

Objective met - 37 projects registered on NIHR

portfolio with 29 projects actively recruiting (including

6 interventional studies )

Implement EDGE software for researchers at the Trust EDGE rolled out from 1st

April 2013. Further work

planned in collaboration with RUH to ensure uniform

workflows are rolled out

To ensure the level of publications in peer reviewed journals

are in line with previous volumes.

Target achieved. 46 peer reviewed journals published

(increase of +8 from previous year)

To ensure the level of presentations/abstract publications

are in line with previous volumes.

69 presentations/abstracts recorded, (increase of +5

from previous year)

Submit Annual report to the Board in July. Annual Report submitted and presentation to Board

September 2014

To complete all actions from the MHRA inspection report

and MHRA action plan

MHRA action plan has been completed.

To update the Research section on the Trust’s external

website on a regular basis.

Update in progress

To work towards set up of a fully-integrated Clinical Trials

Unit with dedicated space in the Trust.

Research Unit now located on second floor with office

space and clinic room. Work ongoing with day unit to

ensure integrated use of Day unit on 2nd

floor for

infusions when completed.

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Active research including NIHR Portfolio studies

No NIHR Portfolio research – some areas have non-portfolio

Adult

RNHRD Research

Rheumatology

CFS Pain

CTD RA CRPS Pain Management

Adult Paediatric

PsA/ AS

Bone

Adult

Adult

Paediatric

Adult

Paediatric

Adult

12.0 Pictorial representation of research themes at the RNHRD Trust

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APPENDIX 1 – ACTIVE RESEARCH PROJECTS 2013-2014

AUTO-IMMUNE DISEASE

Project ID

Portfolio Start End Project Title Researcher Grant Funder Outputs

RBB 311

NO 01/09/2008 Ongoing Registry for patients with Digital Ulcers Associated with Systemic Sclerosis (DUO)

Prof Neil McHugh

Commercial trial Sponsored by Actelion

RBB 322

YES 01/10/2009 31/10/2019

Investigating genes in patients with polymyositis and dermatomyositis. Multi-centre project to identify and characterise the disease susceptibility genes

Prof Neil McHugh

NIHR Research support costs

2 conference presentations, see Appendix 3 (23&24)

RBB 335

YES 01/07/2010 01/01/2014

Observational study of early diffuse SSc Multi-centre project to examine the effectiveness of different immunosuppressant drugs currently favoured by doctors treating scleroderma.

Prof Neil McHugh

Overall project £623,062. EULAR

RBB 336

YES 19/02/2010 19/02/2016 BILAG Biologics prospective cohort. Multi-centre project to assess if new biological treatments for Lupus patients have any side effects

Prof Neil McHugh

NIHR Research support costs

RBB 339

YES 01/07/2010 01/10/2018

Environmental and genetic risk factors in SLE Multi-centre project to identify genotypes/environmental conditions that may induce/affect SLE

Prof Neil McHugh

NIHR Research support costs

RBB 365

YES 30/10/2011 30/11/2013 TRACTISS – Multicentre trial to assess the extent to which rituximab improves symptoms of fatigue and oral dryness in Sjogren’s patients.

Prof Neil McHugh

University of Leeds

RBB 367

NO 30/01/2012 30/03/2013

Non-coding RNAs in inflammatory myositis – Multi-centre project to investigate if changes in the expression of long intergenic non-coding RNAs is associated with the development of inflammatory myositis and inclusion body myositis.

Dr Phil Hamann

£6,000 RNHRD Charitable Funds

1 published paper, Appendix 3 (7) 2 conference posters, Appendix 3 (15 & 16)

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AUTO-IMMUNE DISEASE

Project ID

Portfolio Start End Project Title Researcher Grant Funder Outputs

RBB 369

N0 01/12/2013 30/08/2014

Phenotypic changes in muscle cells occurs as a result of chemokine signalling. To develop a muscle culture bank to look at muscle cells in myositis.

Dr Phil Hamman

RNHRD Charitable Funds £6,000

RBB 390

YES 07/02/2013 01/11/2022

Sequencing based analysis of SLE. Multi-centre project with King’s College London looking at the genetic basis of systemic lupus erythematosus (SLE).

Prof Neil McHugh

NIHR Research support costs

RBB 394

YES 01/07/2014 31/05/2014

Immunogenetic Factors in Primary Systemic Vasculitis. Multi-centre study to investigate the possible genes responsible for vasculitis.

Prof Neil McHugh

NIHR Research support costs

RBB 398

NO 28/02/2013 30/11/2013 Microvascular imaging in Raynaud’s phenomenon

Dr J Pauling N/A

2 poster presentations Appendix 3 (19&22)

RBB 404

YES 30/09/2013

09/07/2015

Clinical and immunogenetic characterization of giant cell arteritis (GCA) and polymyalgia rheumatica (PMR). To find out the causes and potential severity of GCA and polymyalgia

Prof Neil McHugh

NIHR Research support costs

RBB 418

NO 01/12/2013 30/08/2014 Myositis Validation Scale – RNHRD led study to validate the RNHRD’s muscle myositis validation scale

Dr Eva Lange

RNHRD Charitable Funds £6,000

RBB 425

YES 24/03/2014 30/09/2014 Fatigue Fingerprints in primary sjogrens syndrome. To identify a biological “signature” of fatigue

Prof Neil McHugh

NIHR Research support costs

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BONE

Project ID

Portfolio Start End Project Title Researcher Grant Funder Outputs

RBB 386

YES 01/02/2013 31/01/2015

Pilot Study: Osteoporosis treatment on fat metabolism. To assess the effect of commonly used parenteral osteoporosis treatments on fat metabolism and glucose

Dr Ashok Bhalla/Jackie Webb

NIHR Research support costs

RBB 415

NO 16/10/2013 31/07/2014 Bone mineral density measurement in adolescent patients with Anorexia Nervosa: Friend or Foe?

Dr Bhav Vasta N/A 1 poster presentation Appendix 3 (101)

CHRONIC FATIGUE SYNDROME

RBB 412

NO 31/05/2013 30/05/2014 Why do young people with CFS/ME become depressed? (Student project)

Anna Taylor (University of Bath)

N/A

RBB 423

NO 03/02/2014 29/08/2014 Developing a Patient Reported Outcome Measure (PROM) for children with CFS/ME. Contributions from Health Professionals. (Student project)

Roxanne Potgeiter, University of Bristol

N/A 2 published papers Appendix 3 (33 & 34)

RBB 414

NO 01/09/2013 01/09/2015 Experiences of men with CFS/ME Anne Johnson N/A

PAIN – COMPLEX REGIONAL PAIN SYNDROME

RBB 265

NO 01/06/2006 01/02/2021 Bath CRPS research database Prof Candy McCabe

NIHR Research support costs

RBB 297

NO 01/03/2008 01/03/2043

Establishing a National Complex Regional Pain Syndrome (CRPS) Research Database. To collect data on the characteristics of CRPS, genetic factors, best treatments and the impact of quality of life.

Dr Jane Hall/Prof C McCabe

£14,536

RBB 330

YES 01/07/2010 30/12/2013 Understanding sensorimotor integration and its role in pain

Prof Candy McCabe

Part of c£500k NIHR Fellowship

1 published paper Appendix 3 (42)

19

PAIN – COMPLEX REGIONAL PAIN SYNDROME

Project ID

Portfolio Start End Project Title Researcher Grant Funder Outputs

RBB 353

YES 01/07/2011 01/01/2014 ARM Pain Trial – To investigate the effects on patients awaiting physiotherapy for distal arm pain

Prof Candy McCabe

NIHR Research support costs

1 paper in press Appendix 3 (43)

RBB 360

YES 01/11/2011 20/12/2013 Sensory motor conflict and its relationship to behavioural and neurophysiological variables in patients with chronic pain.

Prof Candy McCabe/ Jacquie Bailey

£500k NIHR Fellowship

1 published paper Appendix 3 (40) 1 conference poster Appendix 3 (51)

RBB 369

YES 01/02/2013 31/01/2015 Development of an Electro-Sensory Device for the relief of pain in CRPS

Prof Candy McCabe

Pain Relief Foundation £18,000

RBB 383

YES 01/02/2013 01/02/2015 Recovery Project – international project investigating how patients with CRPS define recovery

Prof Candy McCabe

RSDA $117,000 Abstract submitted and accepted to attend the IASP, Buenos Aires 2014.

RBB 396

YES 01/06/2013 26/02/2016 Investigating whether visual illusions can be used to treat chronic pain in patients with CRPS. RNHRD led study

Dr Jenny Lewis

NIHR CAT Clinical Lectureship. £228,000 over three years

Invited speaker to 2 conferences. Appendix 3 (61)

RBB 421

NO 06/01/2014 29/09/2014 ibuttons in CRPS. To investigate variations in temperature differences between unaffected and affected limbs in CRPS

Dr Darren Hart

£5,459 RNHRD Charitable Funds

Abstract submitted and accepted for conference, Glasgow September 2014.

RBB 420

NO 03/02/2014 01/07/2015 Dyads in CRPS. To discover the patterns of communication/ collaboration between someone living with CRPS and their support partner.

Dr Jacqueline Bailey

£5,918 RNHRD Charitable Funds

RBB 391

YES 01/03/2013

30/04/2016

Low-dose Intravenous Immunoglobulin Treatment for Complex Regional Pain Syndrome (The LIPS Trial). Interventional trial using Intravenous immunoglobulin (IVIG) treatment

Prof Candy McCabe

Patient travel/ accommodation costs provided NIHR Research support costs

RBB 408

NO 01/08/2013

30/09/2016 Prism and tDCS Treatment of Complex Regional Pain Syndrome (CRPS). Project with University of Oxford investigating limb perception in CRPS

Dr Janet Bultitude

N/A

20

PAIN – PAIN MANAGEMENT

Project ID

Portfolio Start End Project Title Researcher Grant Funder Outputs

RBB 411

NO 01/05/2013 30/09/2013 Anxiety Profiles in adolescents with and without chronic pain (student project)

Emma Fisher N/A

RBB 410

NO 29/08/2013 29/08/2014

Mood changes, alexithymia and medically unexplained symptoms. This research is looking at how people respond to changes in mood after completing a task of listening to music

Dr Faith Martin (University of Bath)

N/A

RBB 412

NO 01/02/2014 30/09/2014 Autistic Spectrum Disorders and Chronic Pain in Childhood

Dr Hannah Connell RCF £13,863.84

RBB 402

Yes 01/03/2014 30/09/2014 SPACE – To find ways to help parents support their children after a diagnosis of arthritis

Dr Hannah Connell NIHR Research support costs

RBB 430

No 01/06/2012 01/06/2013 Staff attitudes of chronic pain patients in A&E Dr J Gauntlett-Gilbert

Donated Funds £1,700

RBB 377

NO 01/06/2012 30/05/2015 BCPS database H Connell/J Gauntlett-Gilbert

N/A

RHEUMATOID ARTHRITIS

RBB 378

NO 04/06/2012 27/12/2013 Facilitating Activity and Self-Management in Arthritis Dr Nicola Walsh (UWE)

N/A

RBB 338

YES 04/01/2010 Ongoing BRAGGS – Predictors of response to biologics Dr John Pauling

NIHR Research support costs

1 published paper Appendix 3 (70)

RBB YES 19/02/2010 19/02/2016 Toxicity from Biologic Therapy Dr John Pauling NIHR Research support costs

1 published paper Appendix 3 (70)

RC46 YES 30/09/2011 30/09/2014 Multi-centre observational clinical trial in RA Dr John Pauling Commercial trial sponsored by UCB

RBB 398

YES 01/07/2013

01/08/2015 SWTCH –To find out the best treatment for RA patients who haven’t benefited from an initial anti-TNF drug

Dr John Pauling NIHR Research support costs

21

RHEUMATOID ARTHRITIS

Project ID

Portfolio Start End Project Title Researcher Grant Funder Outputs

RBB 401

YES 01/07/2013 28/02/2014 Men’s experiences of RA. Interviews with male RA patients.

Dr Catherine Fleurey

NIHR Research support costs

RBB 416

YES 01/06/2013 26/02/2016 Prevent RA - Nationwide Register of First Degree Relatives of Patients with Rheumatoid Arthritis

Dr John Pauling NIHR Research support costs

REHABILITATION

RBB 381

YES 30/03/2012 30/08/2013 Hypermobility Perspectives on Physiotherapy (HPOP). to explore hypermobility patients views on physiotherapy.

Dr Tim Jenkinson, Sin-Ti Towlson

University of the West of England £10k

RBB 397

YES 01/05/2013

30/06/2015

Physiotherapy for Hypermobility Trial (PHyT) To test whether a course of physiotherapy is any better than giving detailed advice about managing joint hypermobility

Sin-Ti Towlson As above

SPONDYLARTHOPATHY

RBB 334

YES 28/06/2010 28/06/2014 National Repository - Investigation of clinical, serological and genetic factors in arthritis

Professor Neil McHugh

NIHR research support costs

1 published paper Appendix 3 (79) 2 conference posters Appendix 3 (87&88)

RBB 346

YES 01/06/2011 31/12/2014 LOPAS 2 – Long-term outcomes in Psoriatic Arthritis Dr William Tillet Abbvie 3 published papers Appendix 3 (84,85,86)

1 conference poster Appendix 3 (93)

RBB 351

NO 01/10/2011 01/04/2013 AXIAL SpA – MRI study Dr Sengupta

Pfizer Investigator Initiated Research Grant £89,440

RBB 363

YES 01/11/2011 ONGOING Genetics of AS Dr Sengupta NIHR Research support coss

RBB 376

YES 01/08/2012 06/08/2014 ADIPSA – A study to help us understand the similarities and differences between PsA and AS

Dr Jadon

Pfizer Investigator Initiated Research Grant £153,600

1 conference poster Appendix 3 (89) 1 oral presentation Appendix 3 (99)

22

SPONDYLARTHROPATHY

Project ID

Portfolio Start End Project Title Researcher Grant Funder Outputs

RBB 381

YES 01/01/2013 31/01/2018 British Society of Rheumatology AS registry. Dr Sengupta NIHR Research Support Costs

RBB 395

YES 01/06/2013 31/03/2014 COMOSpA – A multi-centre study to evaluate the frequency of co-morbidities in AS

Dr Raj Sengupta Per patient payment

RBB 400

NO 01/06/2013 01/07/2014 Prognostic markers in juvenile vs. adult-onset ankylosing spondylitis

Dr Deepak Jadon N/A

1 published papers Appendix 3 (81&82)

2 conference posters appendix 3 (90,91,92)

RBB 402

NO 01/08/2013 01/08/2014 ADIPSA 2 Genetic and serum biomarkers of axial and peripheral radiographic disease in PsA

Dr Deepak Jadon Pfizer £99,000 See Adipsa

RBB 404

YES 01/07/2013 18/07/2016 OUTPASS Outcomes of Treatment in Psoriatic Arthritis Study Syndicate

Prof Neil McHugh NIHR Research Support Costs

RBB 406

NO 01/06/2013 01/01/2014 What is the optimal frequency of blood test monitoring in AS patients on anti-TNF?

Dr Raj Sengupta N/A

RBB 407

NO 01/01/2014 01/01/2014 BASDAI Creep’ – changing perceptions of symptoms despite sustained treatment efficacy?

Dr Raj Sengupta N/A

OTHER

RBB YES 20/09/2012 31/08/2013 Head Articulation Control System – Development of a head and neck collar for use in trauma

Dr N Harris, J Carter

NIHR i4i grant £424,644

2 published papers (including a

systematic review (102)

RBB 425

NO 01/06/2013 30/12/2014 An exploration of patients’ perceptions of treatment outcomes following attendance of a multidisciplinary treatment programme for fibromyalgia. A mixed methods approach.

Sandi Derham

N/A

23

APPENDIX 2 - EXTERNAL FUNDING 2013/2014 The following grants have been awarded during the financial year 2013/2014 for work to be carried out in full or part at the RNHRD. Grants can be administered through the RNHRD, BIRD or the Universities of Bath, Bristol and the West of England.

Grant giving body

Amount Grant Applicants Activity Area Project Title

Pfizer

£99,760

Dr Deepak Jadon

Spondylarthropathy

ADIPSA 2

Abbvie

£3,700

Dr Raj Sengupta

Spondylarthropathy

Spondylarthritis Disease Evaluation (SPADE) Tool website

Abbvie

£4910.50

Dr Raj Sengupta

Spondylarthropathy

BASMI Kinect Project

Pfizer

£35,000

Dr Raj Sengupta

Spondylarthropathy

Funding for a post doctoral research fellow to assess work disability in AS

ARUK Education Grant £6,933 Professor Candy McCabe (co-applicant) grant to be held by University of West of England

Pain

Identifying the current knowledge and confidence of rheumatology nurses in providing advice on pain management.*

Chartered Society of Physiotherapist Research Foundation Trust

£17,519 Sarah Wilson Pain Psychologically Informed Physiotherapy (PIP) for Chronic Pain: patient experiences of treatment and therapeutic process

NIHR Senior Research Fellowship

£864,736

Dr Esther Crawley

Chronic Fatigue Syndrome

Investigating the treatment of paediatric chronic fatigue syndrome or myalgic encephalomeyleitis*

NIHR Postdoctoral fellowship

£321,861

Dr Esther Crawley

Chronic Fatigue Syndrome

CFS in the NHS: diagnosis of CFS in primary care and outcomes after treatment by specialist services. Postdoctoral Fellowship*

MRC

£305,242.67

Dr Esther Crawley

Chronic Fatigue Syndrome

Epidemiology of Chronic Fatigue Syndrome/ME in adolescence.*

Total = £1,659,662.17

Grants administered via the University of the West England

24

NIHR Research Capability Funding (RCF) 2013/2014 Submission Date

Amount Grant Applicants

Activity Area Project Title Outcome

May 2013 £3261.80 Dr Claire Howard

BRIRS Exploring the consequences of breast cancer radiotherapy treatment for men and women with Radiation Induced Auxiliary Tunnel Damage (RI ATD). Lessons learnt and developing an integrated intervention to improve quality of life for individuals and families living with the late effects of cancer treatment.

The funding was used for grant development work to secure an external NIHR grant application. However as the project was not large enough to go for a straight NIHR grant, a donated funds application was submitted to complete the pilot work. The donated funds research will form the platform for submitting an NIHR application in the future.

June 2013

£13,592

Dr Hannah Connell

Pain

Autism and chronic pain (ALSPAC)

In progress

June 2013

£15,009

Professor N McHugh

Spondyl arthropathy

NIHR programme grant development work to support Professor N McHugh, Dr William Tillett and Dr Alison Nightingale

NIHR programme grant was submitted in October 2013 and the final outcome of the award in pending following success through to the 3

rd review stage

March 2013 £21,124 Professor C McCabe/ Alison Llewellyn

Pain RfPB Non-pharmacological interventions for Painful Diabetic Neuropathy (PDN) RfPB Delivering a tailored multi-disciplinary rehabilitation programme for those with breast radiotherapy late effects Programme Development Grant. Prevention and optimal management of post-surgical/trauma chronic pain

Work in progress, application to be submitted in the autumn 2014. Pilot work in progress which has been funded by RNHRD Charitable Funds. Long-term plan is to apply for an NIHR RfPB. Work in progress to apply for a NIHR programme grant. Application to be submitted in October 2014.

Total £52,986.80

*RCF is also used to support R&D sponsorship duties

25

RNHRD Charitable Funds Grants awarded 2013/2014

Submission Date

Amount Grant Applicants Activity Area Project Title Outcomes

October 2013

£5251 Dr Claire Howard Pain Are current health care services meeting the needs of breast cancer survivors living the consequences of treatment?

Project in progress. The donated funds research will form the platform for submitting an NIHR application in the future.

October 2013

£5459 Dr Darren Hart Pain Ambulatory skin temperature asymmetry measurement using the ibutton with complex regional pain syndrome.

Dr Hart has a poster conference presentation accepted at the Institute of Physics and Engineering in Medicine, Glasgow Autumn 2014.

October 2013

£6,000 Dr Eva Lange Auto-immune Validation of the Myositis Muscle Dysfunction Scale (MMDS) in adult patients with polymyositis and dermatomyositis

Project in progress. Expected project end date is November 2014.

October 2013

£6,000 Dr Phil Hamman Auto-immune Phenotypic changes in muscle cells occur as a result of chemokine signalling.

Dr Hamman has been awarded a BSR fellowship to support his PhD.

November 2013 £2,200 Dr Raj Sengupta/Zoe Betteridge

Spondyl- arthropathies

Defining novel auto-antibodies in serum samples from patients with AS.

Project in progress

November 2013 £5918 Dr Jacquie Bailey/Prof Candy McCabe

Pain The challenges of pain management in a CRPS dyad

Project in progress

November 2013 £1,700 Dr Jeremy Gauntlett-Gilbert Pain Investigating treatment non-response in an adult chronic pain population.

Project in progress

Total £32,528

26

APPENDIX 3 – Publications 2013/2014

Autoimmune Diseases – Book Chapters

1 Murray A, Pauling J D. Non-invasive imaging in Raynaud’s phenomenon. Book title: Raynaud’s phenomenon Editors Wigley F, Herrick A. Springer Science. Springer; 2014 1st edition

2 Flower V, Pauling J D, McHugh NJ. Autoantibodies in Raynaud’s phenomenon. Book title: Raynaud’s phenomenon Editors Wigley F, Herrick A. Springer Science. Springer; 2014 1st edition

Autoimmune Diseases – Published Papers

3 Cuadrado MJ et al (including McHugh, N.) Low-dose aspirin vs low-dose aspirin plus low-intensity warfarin in thromboprophylaxis: a prospective, multicentre, randomized, open, controlled trial in patients positive for antiphospholipid antibodies (ALIWAPAS). Rheumatology (Oxford). 2014 Feb;53(2):275-84. doi: 10.1093/rheumatology/ket313. Epub 2013 Oct

4 Ferbas J, Belouski SS, Horner M, Kaliyaperumal A, Chen L, Boyce M, Colaço CB, McHugh N, Quick V, Nicholl RJ, Siu G, Chung J. A novel assay to measure B cell responses to keyhole limpet haemocyanin vaccination in healthy volunteers and subjects with systemic lupus erythematosus. Br J Clin Pharmacol. 2013 Aug;76(2):188-202. doi: 10.1111/bcp.12172

5 Gunn J, Pauling JD, McHugh NJ. Impact of anti-centromere antibodies on pulmonary function test results in patients with systemic sclerosis without established or suspected pulmonary disease. Clin Rheumatol. 2014 Apr 22. [Epub ahead of print

6 Guillevin L, Hunsche E, Denton CP, Krieg T, Schwierin B, Rosenberg D, Matucci-Cerinic M, McHugh, N; DUO Registry Group. Functional impairment of systemic scleroderma patients with digital ulcerations: results from the DUO Registry. Clin Exp Rheumatol. 2013 Mar-Apr;31(2 Suppl 76):71-80. Epub 2013 Jul 22 . Duo Registry

7 Hamann PD, Cooper RG, McHugh NJ, Chinoy H. Statin-induced necrotizing myositis - A discrete autoimmune entity within the "statin-induced myopathy spectrum" Autoimmun Rev. 2013 Jul 11. pii: S1568-9972(13)00124-9. doi:10.1016/j.autrev.2013.07.001. [Epub ahead of print] Donated Funds

8 Lendrem D, Mitchell S, McMeekin P, Bowman S, Price E, Pease CT, Emery P, Andrews J, Lanyon P, Hunter J, Gupta M, Bombardieri M, Sutcliffe N, Pitzalis C, McLaren J, Cooper A, Regan M, Giles I, Isenberg D, Vadivelu S, Coady D, Dasgupta B, McHugh N, Young-Min S, Moots R, Gendi N, Akil M, Griffiths B, Ng WF; on behalf of the UK primary Sjögren's Syndrome Registry. Health-related utility values of patients with primary Sjogren's syndrome and its predictors. Ann Rheum Dis. 2013 Jun 12. [Epub ahead of print] Sjogren’s Registry

9 Miller FW, Cooper RG, Vencovský J, Rider LG, Danko K, Wedderburn LR, Lundberg IE, Pachman LM, Reed AM, Ytterberg SR, Padyukov L, Selva-O'Callaghan A, Radstake TR, Isenberg DA, Chinoy H, Ollier WE, O'Hanlon TP, Peng B, Lee A, Lamb JA, Chen W, Amos CI, Gregersen PK; McHugh, N; Myositis Genetics Consortium. Genome-wide association study of dermatomyositis reveals genetic overlap with other autoimmune disorders. Arthritis Rheum. 2013 Dec;65(12):3239-47. doi: 10.1002/art.38137

10 Nordmark G, Wang C, Vasaitis L, Eriksson P, Theander E, Kvarnström M, Forsblad-d'Elia H, Jazebi H, Sjöwall C, Reksten TR, Brun JG, Jonsson MV, Johnsen SJ, Wahren-Herlenius M, Omdal R, Jonsson R, Bowman S, Ng WF, Eloranta ML, Syvänen AC; McHugh, N; UK Primary Sjögren’s Syndrome Registry. Association of genes in the NF-κB pathway with antibody-positive primary Sjögren's syndrome. Scand J Immunol. 2013 Nov;78(5):447-54. doi: 10.1111/sji.12101 Sjogren’s Registry

11 Panopoulou A, Vermaak E, McHugh NJ. A surprise behind a case of winter vomiting virus. BMJ Case Rep. 2013 Jul 22;2013. pii: bcr2013010022. doi: 10.1136/bcr-2013-010022.

12 Tansley SL, Betteridge ZE, McHugh NJ. The diagnostic utility of autoantibodies in adult and juvenile myositis. Curr Opin Rheumatol. 2013 Nov;25(6):772-7. doi:10.1097/01.bor.0000434664.37880.ac Myositis Doris Hillier

13 Vasta B, Flower V, Bucciarelli-Ducci C, Brown S, Korendowych E, McHugh NJ, Pauling JD. Abnormal cardiac enzymes in systemic sclerosis: a report of four patients and review of the literature. Clin Rheumatol. 2014 Mar;33(3):435-8.

27

Autoimmune – Conference Posters/Abstracts 14 Denton CP, Guillevin L, Hunsche E, Rosenberg D, Schwierin B, Scott M, Krieg T, Anderson M, Hall FC, Herrick A, McHugh N, Matucci-Cerinic. Impact of digital ulcers in scleroderma on work and

daily activities: a subgroup analysis of UK patients enrolled in the DUO registry.

15 Hamann P, Heward J, McHugh N, Lindsay MA. A pilot study evaluating RNA transcription profiles in idiopathic inflammatory and inclusion body myositis: a next generation sequencing approach. BSR, Birmingham April 2013

16 Hamann P, J Heward J, McHugh N, Lindsay M. Next generation sequencing analysis of the transcriptome in muscle obtained from anti-Jo 1 positive idiopathic inflammatory myositis and inclusion body myositis: a pilot study. EULAR Madrid June 2013 CTD Myositis Donated Funds

17 Jani M, Chinoy H, Betteridge ZE, New P, McHugh NJ, Cooper RG. Use of anti-200/100 antibody in the evaluation of statin induced myositis: experience of a UK based tertiary myositis-referral centre. EULAR Madrid June 2013

18 Pauling JD, Shipley JA, Hart D, Milne GL, McHugh NJ. Evaluating The Effects Of Combination Aspirin and Dipyridamole (asasantin retard) On Platelet Function, Oxidative Stress and Peripheral Vascular Function In Primary Raynaud’s Phenomenon and Systemic Sclerosis. ACR Annual Scientific Meeting, San Diego November 2013. Arthritis & Rheumatism 65(10 (Supplement): S299.

19 Scolnik M, Vasta B, Hart D, Shipley JA, Brown S, Korendowych E, McHugh NJ, Pauling JD. Correlation Between Patient Self-Report Of Symptoms Of Raynaud’s Phenomenon and Objective Assessment Of Digital Microvascular Perfusion Using Infrared Thermography. American College of Rheumatology Annual Scientific Meeting, San Diego November 2013 and International Workshop on Scleroderma Research, Boston, August 2013. Arthritis & Rheumatism 65(10 (Supplement): S299.

20 Sutton EJ, Watson KD, Isenberg D, Rahman A, Gordon C, Yee C-S, Lanyon P, Jayne D, Akil M, D’Cruz D, Khamashata M, Lutalo P, Erb N, Prabu A, Edwards CJ, Youssef H, McHugh N, Vital E, Amft N, Griffiths B, Teh L-S, Zoma A, Bruce I. Characteristics of patients with refractory systemic lupus erythematosus requiring biologic therapy in a UK multicentre cohort. BSR, Birmingham April 2013

21 Tansley S, Betteridge Z, Gunawardena H, Shaddick G, Varsani H, Wedderburn L, McHugh N. Anti-NXP2 autoantibody status is a predictor of calcinosis in older but not younger children who develop juvenile dermatomyositis. British Society of Rheumatology (BSR) Birmingham April 2013 CTD Myositis Doris Hillier

22 Vasta B, Scolnik M, Hart D, Shipley JA, Brown S, Korendowych E, McHugh NJ, Pauling JD. Association Between Nail Fold Capillaroscopy Abnormalities and Thermographic Assessment Of Peripheral Microvascular Dysfunction In An Unselected Cohort Of Patients Under Investigation For Symptoms Of Raynaud’s Phenomenon. American College of Rheumatology Annual Scientific Meeting (ACR) San Diego November 2013 and International Workshop on Scleroderma Research Boston 2013.

23 Vermaak E, McHugh NJ. Evidence For Immunotherapy In Polymyositis and Dermatomyositis:A Systematic Review. ACR Annual Scientific Meeting, San Diego Nov 2013

24 Vermaak E, Shaddick G and McHugh NJ. Mortality In Polymyositis and Dermatomyositis: A Single Centre. American College of Rheumatology Annual Scientific Meeting, San Diego Nov 2013

25 W.-F. Ng, A. Miller, S. Bowman, E. Price, G. Kitas, C. Pease, P. Emery, P. Lanyon, J. Hunter, M. Gupta, I. Giles, D. Isenberg, J. MaClaren, M. Regan, A. Cooper, S. Young-Min, M. Bombardieri, N. Sutcliffe, C. Pitzalis, S. Vadivelu, D. Coady, K. MacKay, R. Moots, S. Mitchell, N. Mchugh, B. Dasgupta, M. Trenell, UKPSSR. Level of physical activity in primary Sjogren’s syndrome. EULAR Madrid June 2013

Auto-immune – Oral Presentations 26 a) b) c) d) e)

Professor Neil McHugh – Invited Lectures 2013-2014 • ‘Serological markers in connective tissue disease’ - RUH May 10th 2013 Bath • Manchester Medical Society - ‘Ordering and Interpreting autoantibody tests: a physician’s guide’ October 2nd 2013 Manchester • Visiting Danish Rheumatologists - ‘Psoriatic arthritis: an update’ - October 13th 2013 Bath • UK Myonet meeting - ‘Standards of care in myositis’ November 27th 2013 London • Scleroderma Study Day - ‘Serological markers in scleroderma’ - December 4th 2013 Bath

28

Bone – Book Chapters 27

Jadon D, Ahmed T, Bhalla AK. Disorders of Bone Mineralisation: Osteomalacia and Rickets. Oxford Textbook of Rheumatology. 2013. 4th edition. Oxford University Press.

Chronic Fatigue Syndrome (Paediatrics) – Published papers

28 Beasant L, Mills N, Crawley E. Adolescents and mothers value referral to a specialist service for chronic fatigue syndrome or Myalgic Encephalopathy (CFS/ME). Primary Health Care Research & Development. Prim Health Care Res Dev. 2013 Apr 25:1-9.

29 Bould H, Collin S, Lewis G, Rimes K, Crawley E. Depression in paediatric chronic fatigue syndrome (CFS): a cross-sectional study. Archives of Disease in Childhood. Arch Dis Child. 2013 Jun;98(6):425-8. doi: 10.1136/archdischild-2012-303396.

30 Crawley E, Mills N, Hollingworth W, Esther Crawley, Deans Z, Sterne J, Beasant L, Donovan J, Montgomery A . Comparing specialist medical care with specialist medical care plus the d Trial. Trials. 2013 Dec 26;14:444. doi: 10.1186/1745-

6215-14-444.

31 Crawley E, Mills N, Beasant L, Johnson D, Collin M, Deans Z, White K, Montgomery A. The feasibility and acceptability of conducting a trial of Specialist Medical Care and the Lightning Process in children with Chronic Fatigue Syndrome: feasibility randomised controlled trial (SMILE study). Trials.2013, 14:415. DOI: 10.1186/1745-6215-14-415

32 Crawley E. The epidemiology of chronic fatigue syndrome/myalgic encephalitis in children. Arch Dis Child Arch Dis Child. Arch Dis Child. 2014 Feb;99(2):171-4.

33 Crawley E, Collin SM, White PD, Rimes K, Sterne JA, May MT; CFS/ME National Outcomes Database. Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database. QJM. 2013 Jun;106(6):555-65. doi: 10.1093/qjmed/hct061. Epub 2013 Mar 28.

34 Haywood K, Collin S, Crawley E. Assessing severity of illness and outcomes of treatment in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): a systematic review of patient-reported outcome measures. Child: Care, Health & Development 2014 Mar 24. doi: 10.1111/cch.12135

35 Fisher H, Crawley E. Why do young people with CFS/ME feel anxious? A qualitative study. Clin Child Psychol Psychiatry. 2013; 18:556-573

36 Potgieter R, Patel A, Beasant L , Haywood K, Johnson D, Crawley, E. Aspects of life and well-being that matter to children and young people with CFS/ME: A conceptual model. Child: Care, Health and Development (submitted)

Chronic Fatigue Syndrome (Adults) – Oral Presentations

37 Baldwin, D. Behavioural interventions for adults with CFS/ME: A systematic review. The University of the West of England, Health and Life Sciences Post-graduate Conference, Bristol, June 2013

29

Pain – Complex Regional Pain Syndrome – Book Chapters 37 McCabe C, Haigh R, Cohen H, Hewlett S. Pain and fatigue. (Eds Watts RA, Conaghan P, Denton C, Foster H, Isaacs JD, Muller-Ladner U). Oxford Textbook of Rheumatology 4

th Edition. Section

2 Chapter 12. Oxford University Press: Oxford. October 2013.

38 McCabe CS, Rodham K, Hall J, Lewis J. Diagnosis and treatment of Complex Regional Pain Syndrome. Grünert J (Eds) The Radius. Springer 2013 in press

39 Walsh N, Jones L, McCabe CS. The mechanisms and actions of Motor Imagery within the clinical setting. Textbook of Neuromodulation. Chapter 13. 2013 In press

Pain (CRPS) - Published Papers 40 Bailey J, Nelson S, Lewis J, McCabe C. Imaging and clinical evidence of sensorimotor problems in CRPS: utilizing novel treatment approaches. J of Immune Neuropharmacology 2013:

8(3):564-575

41 Cohen H, McCabe C, Harris N, Johnson K, Coales K, Hall J, Lewis J, Rodham K, Blake D. Clinical evidence of parietal cortex dysfunction and correlation with extent of allodynia in Complex Regional Pain Syndrome (CRPS) Type 1. Eu J Pain 2013; 17(4):527-38

42 Foell J, Bekrater-Bodmann R, McCabe CS, Flor H. Sensorimotor incongruence and body perception: an experimental investigation. Front Hum Neuroscience 2013; Jun 24;7:310. doi: 10.3389/fnhum.2013.00310

43 Jones GT, Mertens K, Macfarlane GJ, Palmer KT, Coggon D, Walker-Bone K, Burton K, Heine P, McCabe C, McNamee P, McConnachie A. Maintained physical activity and physiotherapy in the management of distal upper limb pain - a protocol for a randomised controlled trial (the Arm Pain Trial). BMC Musculoskeletal Disorders; 2014 in press

44 Moule P, Lewis JS, McCabe CS. Designing and delivering an educational package to meet the needs of primary care health professionals in the diagnosis and management of those with Complex Regional Pain Syndrome. Musculoskeletal Care 2014; 12(2):114-7

45 McCabe CS. Commentary on Zyluk and Puchalski 2013. Complex regional pain syndrome: observations on diagnosis, treatment and definition of a new subgroup. J of Hand Surgery Eur 2013;38(6):607-8. Invited article

46 McCabe CS. Rehabilitation of Complex Regional Pain Syndrome: evidence based or trial and error? Pain Management 2013; 3 (2):147-15

47 Pickering AS, McCabe CS. Commentary on Niesters et al 2013. Prolonged ketamine infusion as a therapy for Complex Regional Pain Syndrome: Synergism with antagonism? Br. J. Clin. Pharmacol. 2013; May 23. doi: 10.1111/bcp.12157.

48 Rodham K, McCabe C, Pilkington M, Regan L. Coping with chronic Complex Regional Pain Syndrome: advice for patients from patients. Chronic Illness 2013; 9 (1): 29-42

49 Shenker NG, Goebel A, Rockett M, Batchelor J, Jones G, Parker RA, Williams A, McCabe C. Establishing the prognosis for patients with chronic Complex Regional Pain Syndrome: the value of the CRPS-UK Registry. British Journal of Pain 2014 in press

50 Turton AJ, Palmer M, Grieve S, Moss T, Lewis J, McCabe CS. Evaluation of a prototype tool for communicating body perception disturbances in Complex Regional Pain Syndrome (CRPS). Front. Hum. Neurosci.2013; 7:1-8

30

Pain (CRPS) - Conference Posters/Abstracts

51 Bailey J, Alford C, Palmer S, Brown C, Jones A, McCabe C. Does sensor-sensory conflict induce new/exacerbate current symptoms in Complex Regional Pain Syndrome (CRPS) and healthy volunteers in the same manner as sensory-motor conflict? Complex Regional Pain Syndrome International Scientific and Clinical Meeting, Bath. 2013

52 Bailey J, Alford C, Palmer S, Brown C, Jones A, McCabe C. Exploring potential risk factors for Complex Regional Pain Syndrome (CRPS) in healthy volunteers. Complex Regional Pain Syndrome International Scientific and Clinical Meeting, Bath. 2013

53 Davies B, Cramp F, Gauntlett-Gilbert J, McCabe C. Painful diabetic neuropathy: A systematic review of physical activity and psychological coping strategies. Bristol Research in Practice Symposium 2014

54 Davies B, Cramp F, Gauntlett-Gilbert J, McCabe C. Clinician and patient perspectives on multidisciplinary rehabilitation for painful diabetic neuropathy (PDN). Allied Health Professions Conference, Bristol Community Health, Bristol, Feb 2014. Poster - Commended

55 Grieve S, Adams J, McCabe C "What I really needed was the truth" Exploring the information needs of people with CRPS. Poster presentation at Complex Regional Pain Syndrome International Scientific and Clinical Meeting. 20-22 November 2013

56 Hall J, Nelson S, Bailey J, Rowett-Harris J, Tarassoli P, Palmer S, Goebel A, Atkins R, McCabe C. Body perception and motor planning after limb fracture. 8th Congress of the European Pain Federation. October 2013

57 Hall J, Nelson S, Bailey J, Rowett-Harris J, Tarassoli P, Palmer S, Goebel A, Atkins R, McCabe, C. Quantitative sensory testing after wrist and ankle fracture. 8th Congress of the European Pain Federation. October 2013.

58 Howard C, Llewellyn A, Moorhouse D, McCabe C. “It is fantastic that late effects have been recognised and understood” Evaluating a newly designed multidisciplinary brief intervention for women living with the long term consequences of radiotherapy treatment after breast cancer. Bristol Research in Practice Symposium 2014

59 Howard C, Packer L, Moorhouse D, Mancero S, McGee B, Wolstenholme V, McCabe C. “It is fantastic that late effects have been recognised and understood” Evaluating a newly designed multidisciplinary brief intervention for women living with the long term consequences of radiotherapy treatment for breast cancer. Health Psychology Conference 2013

Pain – Complex Regional Pain Syndrome – Oral Presentations/Media Presentations

60

a) b) c) d) e) f) g) h) i) j) k) l) m)

Professor Candy McCabe (Invited Speaker)

Complex Regional Pain Syndrome: so much more than just a painful limb. Pfizer Masterclass in Neuropathic Pain x 5 (Manchester, Swindon, Cambridge, Stirling, Warwick). I

Sensory and motor interactions in CRPS. Complex Regional Pain Syndrome International Scientific and Clinical Meeting, Bath. November 2013.

Mirror visual feedback and graded motor imagery. Complex Regional Pain Syndrome International Scientific and Clinical Meeting, Bath. November 2013.

Experience of applying for an NIHR Fellowship. NIHR Fellowship event. University of Bath. September 2013.

Using multi-disciplinary rehabilitation approaches to help patients’ self-manage chronic pain. West Midlands Rheumatology meeting. September. Invited speaker.

Clinical research into chronic pain: learning from current practice to inform future practice. University of Bath Professional Doctorate Annual conference. September 2013..

CRPS out on a limb and irrelevant to me. Time to think again. Bath Pain Forum, Bath. September. Keynote speaker. Summer 2013

Treatment of CRPS at the RNHRD, Bath. Experiences and further developments. Munich Rehabilitation symposium. Munich, Germany. July 2013.

Mirror therapy, experiences and problems. Neurokognotive Rehabilitation International Symposium, Hanover, Germany. June.

The identification, diagnosis and management of Complex Regional Pain Syndrome (CRPS). South Wales Pain meeting, Swansea. May 2013.

Clinical research into chronic pain: learning from current practice to inform future practice. The Bristol Research in Practice annual Symposium, Bristol. May 2013. Media presentations

Women’s Hour, BBC 4

31

61 Dr Jenny Lewis – • European Pain meeting EFIC Florence Oct 2013, invited speaker presented pilot data and methods of the MIRAGE study

International CRPS conference November 2013- organiser and speaker.

Pain (Pain Management) – Papers

62 Gauntlett-Gilbert J, Wilson S (2013) Veterans and chronic pain. British Journal of Pain, 7, 79-84

63 Dunford E, Thompson M, Gauntlett-Gilbert J. Parental behaviour within paediatric chronic pain: a qualitative observational study. Clinical Child Psychol Psychiat doi: 10.1177/1359104513492347

Pain (Pain Management) Conference Posters/Abstracts

64 Gauntlett-Gilbert J, Brook, Gavriloff (2013) Benzodiazepines are worse than opioids: negative medication effects in severe chronic pain. British Pain Society ASM abstract

65 Gauntlett-Gilbert J (2013) Not everyone is a meditator: subgroups of patients with severe chronic pain defined by mindfulness and acceptance variables. British Pain Society ASM abstract

66 Gauntlett-Gilbert, Connell H, Clinch J. (2013) More accepting or less catastrophic? Therapeutic change in adolescent chronic pain treatment. British Pain Society ASM abstract

67 Gauntlett-Gilbert, Rogers, Gavriloff D. (2013) Quality of Life in adolescents with chronic pain. British Society for Rheumatology Abstract

68 Dunford, Thompson, Gauntlett-Gilbert J (2013) Parental behaviour in paediatric chronic pain: an observational study. International Society for Paediatric Pain abstract

Rheumatoid Arthritis – Published Papers

69 Bluett J, (et al including McHugh, N). Association of a complement receptor 1 gene variant with baseline erythrocyte sedimentation rate levels in patients starting anti-TNF therapy in a UK rheumatoid arthritis cohort: results from the Biologics in Rheumatoid Arthritis Genetics and Genomics Study Syndicate cohort. Pharmacogenomics J. 2014 Apr;14(2):171-5. doi: 10.1038/tpj.2013.26. Epub 2013 Jul 16.

70

Yarwood A, Viatte S, Plant D, Morgan AW, Isaacs J, Wilson AG, Hyrich K, Eyre S, Barton A, McHugh, N; Biologics in Rheumatoid Arthritis Genetics and Genomics Study Syndicate (BRAGGSS). Testing the role of vitamin D in response to antitumour necrosis factor α therapy in a UK cohort: a Mendelian randomisation approach. Ann Rheum Dis. 2014 May 1;73(5):938-40. doi: 10.1136/annrheumdis-2013-204443. Epub 2013 Dec 9 Rheumatoid arthritis BSR register

Rheumatoid Arthritis – Conference Posters/Abstracts

71 Ahmed T, Hamann P, Arumugam R, Annesley C, Sengupta R. Efficacy for as needed rituximab in patients with rheumatoid arthritis: a single centre review of routine clinical practise. i87. Rheumatology 2014 Vol 53. Supplement 1.

72 Miller A, Nightingale AL, Sammon CJ2, Holt T, Mahtani KR, McHugh N, de Vries CS2, Luqmani RA. The Diagnostic Accuracy Of Rheumatoid Factor Testing In Primary Care. American College of Rheumatology Annual Scientific Meeting, San Diego November 2013

32

Spondylarthropathies - Books/book chapters 73

Jadon D & McHugh NJ. Chapter 38: Other seronegative spondyloarthropathies. Medicine. 2014. Medicine Publishing: Elsevier. May 2014.

74 Jadon D & McHugh NJ. Chapter 1: Symptoms and Diagnosis of Psoriatic Diseases. Psoriatic Arthritis. 2013. Future Science Group

Spondylarthropathies - Published papers

75

Coates LC et al (including McHugh, N) Psoriatic arthritis screening tools: study design and methodologic challenges - reply from authors. Br J Dermatol. 2014 Apr;170(4):995-6. doi: 10.1111/bjd.12824

76 Coates LC et al (including McHugh, N). Development and testing of new candidate psoriatic arthritis screening questionnaires combining optimal questions from existing tools. Arthritis Care Res (Hoboken). 2014 Jan 27. doi: 10.1002/acr.22284. [Epub ahead of print] PEST

77 Flower V, Ritchie S, Mayer R, Donati M, Bond D, Waldron N, Korendowych E, Sengupta R, Pauling J. Development in local guidelines for the management of patients on biologic therapy following exposure to or infection with VZV. i117. Rheumatology 2014 Vol 53.

78

Hamann P. and Sengupta R. Back to the future: The diagnosis and management of back pain in primary care. Clinical Focus Primary Care 2013. 7(3):184-189

79 Hébert HL, Bowes J, Smith RL, McHugh NJ, Barker JN, Griffiths CE, Barton A, Warren RB. Polymorphisms in IL-1B Distinguish between Psoriasis of Early and Late Onset. J Invest Dermatol. 2014 May;134(5):1459-62. doi: 10.1038/jid.2013.485. Epub 2013 Nov 12. National Repository

80

Isdale A, Keat A, Barkham N, Bennett AN, Gaffney K, Marzo-Ortega H, Sengupta R. Expanding the spectrum of inflammatory spinal disease: AS it was, as it is now. Rheumatology (Oxford). 2013 Jul 19.

81

Jadon D, Ramanan A, Sengupta R. Juvenile Versus Adult-onset Ankylosing Spondylitis -- Clinical, Radiographic, and Social Outcomes. A systematic review. The Journal of Rheumatology. 2013;40(11):1797-805

82

Jadon D, Sengupta R, Ramanan A. Challenges in the management and research of juvenile onset ankylosing spondylitis. Int J Clin Rheumatology 2013;8(6):1-3.

83

Sykes M, Doll, H, Sengupta R, Gaffney K. Delay to diagnosis in AS: are we improving? i143. Rheumatology 2014. Vol 53. Supplement 1

84

Tillett W, Adebajo A, Brooke M, Campbell W, Coates LC, FitzGerald O, Gossec L, Helliwell P, Hewlett S, James J, Minnock P, Reast A, O'Sullivan D, de Wit M, McHugh N. Patient involvement in outcome measures for psoriatic arthritis. Curr Rheumatol Rep. 2014 May;16(5):418. doi: 10.1007/s11926-014-0418-7 LOPAS

85

Tillett W, Richards G, Cavill C, Sengupta R. Cross sectional study of work disability in spondyloarthritis using the WPAI-SpA. i165. Rheumatology 2013. Vol 52. Supplement 1. (LOPAS)

86

Tillett W, Jadon D, Shaddick G, Robinson G, Sengupta R, Korendowych E, de Vries CS, McHugh NJ. Feasibility, reliability and sensitivity to change of four radiographic scoring methods in patients with psoriatic arthritis. Arthritis Care Res (Hoboken). Arthritis Care Res (Hoboken). 2014 Feb;66(2):311-7. doi: 10.1002/acr.22104. LOPAS

33

Spondylarthropathies - Conference Posters/Abstracts/letters 87

Bluett J, Bowes J, Ho P, McHugh N, Burden D, FitzGerald O, Barton A. Using ENCODE data to identify potential functional genetic variants at the SQ31 psoriatic arthritis susceptibility locus. BSR, Birmingham April 2013 PsA National Repository

88 Budu-Aggrey A, Bowes J, Ho P, Bluett J, Hebert H, Marzo-Ortega H, Morgan AW, Brown MA, McManus R, McHugh N, FitzGerald OM, Bruce IN, Barton A. Investigating a Novel Locus For Psoriatic Arthritis. American College of Rheumatology Annual Scientific Meeting, San Diego November 2013 PsA National Repository

89 Jadon D. Systematic Review: Serum biomarkers in PsA. GRAPPA annual meeting, Toronto Canada, July 2013

90 Jadon D, Sengupta, R. Ramanan AV. Primary and subsequent orthopaedic surgeries more common in juvenile vs adult-onset AS’. American College of Rheumatology, San Diego USA, October 2013.

91 Jadon D, Hunt L, Arumugam R, Ramanan A, Sengupta R. Prognostic markers in juvenile vs adult onset Ankylosing spondylitis. Annals Rheumatic Diseases 2013: 72(Supp 3). 522. Presented at EULAR, Madrid June 2013

92 Jadon D, Hunt L, Arumugam R, Ramanan A, R Sengupta. Primary & Subsequent Orthopedic Surgeries More Common In Juvenile Vs. Adult-Onset Ankylosing Spondylitis. Arthritis and Rheumatism 2013: 65(10) S652.

93 Tillett W, Shaddick G, Askari A, Cooper A, Creamer P, Clunie G, Helliwell PS, Kay L, Korendowych E, Lane S, Packham J, Shaban R, Williamson L, deVries C and McHugh N. Long Term Outcomes In Psoriatic Arthritis 2; A Prospective Multicentre Observational Study Of Work Disability In Psoriatic Arthritis: First Report Of The Clinical and Socioeconomic Associations Of Work Disability In Psoriatic Arthritis. American College of Rheumatology Annual Scientific Meeting, San Diego November 2013 PsA LOPAS II

94

Wallis D, Waldron N, McHugh N, Korendowych E. TNF inhibitors in psoriatic arthritis: effects on nail disease – an observational study. BSR, April 2013

95 Tillett W, Jadon D, Shaddick G, Cavill C, Robinson G, Sengupta R, Korendowych E, de Vries C, McHugh N. The feasibility, reliability and sensitivity to change of four radiographic scoring methods in patients with psoriatic arthritis. BSR, Birmingham April 2013 LOPAS

96

Wallis D, Waldron N, McHugh N, Korendowych E. TNF inhibitors in psoriatic arthritis: effects on nail disease – an observational study. British Society of Rheumatology Birmingham April 2013PsA LOPAS

97

O'Shea, D, Thomas, A, Turner-Cobb J, , Hill I, Clarke E, Groves, L, France B, Sengupta R. Evaluating the impact of a specialist Ankylosing Spondylitis rehabilitation programme on a patients quality of life. EULAR 2013

34

Spondylathropathies – Oral presentations 98 Professor Neil McHugh

• ARUK Study day ‘Stratified Medicine for psoriatic arthritis’ - July 24th 2013 Manchester • South West of England and Wales Dermatology Society and Dowling Club Seventh New Perspectives in Research and Management in Ankylosing Spondylitis ‘Update on ARUK

clinical study group’ September 18th 2013 Birmingham

99 Dr Deepak Jadon

Prognostic Markers in juvenile vs adult-onset ankylosing spondylitis, Paediatric Rheumatology European Society – Slovenia September 2013

Biomarkers in PsA. ARUK Spondylarthropathy CSG, April 2013

100 Dr Raj Sengupta

‘Talking AS – Innovation Theatre’ BSR, May 2013, Birmingham

SpA Special Interest Group Meeting – chair - BSR, May 2013, Birmingham

Social media in Rheumatology – chair - BSR, May 2013, Birmingham

Spondyloarthritis abstracts – chair - BSR, May 2013, Birmingham

‘Update in AS’ – 7th

May 2013, Leicester

MRI training for rheumatologists – chair - 8th May 2013, Bath

Back in Focus - ‘Inflammatory back pain’, 7th

June 2013, Manchester

NASS Annual AGM - ‘Whats new in AS’, 29th

June 2013, Birmingham

Back Pain Seminar for GPs - ‘How to investigate back pain’ 4th

July 2013, Manchester

‘Axial Spondyloarthritis’, 2nd

October 2013, Scottish Parliament, Scotland

Visiting Danish Rheumatologists - ‘AS: an update’ - October 13th 2013 Bath

Back Pain Seminar for GPs - ‘How to investigate back pain’ 28th

November 2013, London

Back in Focus - ‘Inflammatory back pain’, 5th

December 2013, London

Don’t turn your back on it International Summit – ‘Reaching people with IBP living across Europe’ 21st

January 2014, London

‘Diagnosis Issues in axial spondyloarthritis’ – 14th

February 2014, Manchester

‘Joint injection techniques for GPs’ – 4th

March 2014, Frome

Other- Published papers 101 Vasta B, Shipley J, Hart D, Webb J, Bhalla A. Lumbar spine dual x-ray absorptiometry findings in adolescent females with anorexia nervosa. 102

Sparke A, Torlei K, Voss S, Page M, Benger J, Matthews E, Hillman M, Hart D, McLaughlin E, Carter J. The "Necksafe" head articulation control system: a novel cervical immobilisation device. Emergency Medicine.(submitted)

Other - Conference presentations 103 Wilkinson I, Jenkins J, Sengupta R, Carroll P. Case study report: mobility improvements using bilateral Functional Electrical Stimulation in a patient with bilateral lower limb 'fixed

dystonia' (medically unexplained). 4th Annual Conference of the International Functional Electrical Stimulation Society (UK and Ireland Chapter) April 2013 - Southampton

35

Appendix 4

Royal National Hospital for Rheumatic Diseases

Research Key Critical Indicators

Financial Years 2011/12, 2012/13, 2013/14

36

Introduction The following items have been agreed as R&D key critical indicators: o Successful External Grant applications (number and value) o Number of Projects: Non-commercial and commercially funded projects by activity area/programme o Number of Publications, by activity area and sub-divided into Papers, Abstracts/Conference Posters, Oral Presentations, Books/Chapters/Editorials/Letters and Media/Broadcasting o Collaborative projects – number of organisations actively collaborating on projects (local, national and international) o Number of researchers in proportion to total number of trained staff employed o Number of staff receiving training in research methodology eg MSc/PhDs o Dissemination (number of presentations given at Research Forms) o Number of complaints made in respect of research o Reporting to Trust Board – Annual Plan and progress update, Annual report,

Biannual Donated Funds to report These are to assist in assessing performance and success in the overall research of the RNHRD including work done in collaboration with its partners the Universities of Bath, Bristol and the West of England and Bath Institute for Rheumatic Diseases. They aim to provide overall indicators as well as an indication of progress in each activity area. The following pages contain a summary of the key critical indicators for the financial years ie 1 April – 31 March for 2011/2012, 2012/2013, 2013/2014

37

CRITICAL INDICATORS

PUBLICATIONS

Auto immune

Bone Disease

Spondyl- arthropathy

Pain and Pain Management Management

CFS Rheumatoid Arthritis

11 12 13 11 12 13 11 12 13 11 12 13 11 12 13 11 12 13

Papers 12 7 10 0 0 0 11 12 12 19 15 13 9 4 9 0 0 2

Abstracts/ Presentations

24 16 16 0 0 0 7 30 31 41 12 19 5 1 1 0 0 2

Books/

Chapters/

Editorials/

Letters

1 0 2 0 0 1 0 0 2 2 1 3 0 0 0 0 0 0

Media & Broadcasting

0 0 0 0 0 0 1 1 0 2 2 1 5 0 0 0 0 0

41 23 28 0 0 1 15 42 45 64 30 36 19 5 10 0 0 4

ALL ACTIVITY AREAS

Financial Year 2011 2012 2013

Papers 51 38 46

Abstracts/Presentations Presentations

90 64 69

Books/Chapters/Editorials/Letters

5 1 6

Media & Broadcasting 8 2 1

38

PROJECTS

2131

37

2515

25

0

10

20

30

40

50

60

70

2011-2012 2012-2013 2013-2014

Portfolio Non-portfolio

Portfolio vs Non-portfolio studies 3 year period

Financial Year 11/12 12/13 13/14

NIHR Portfolio

Non portfolio

NIHR portfolio

Non- portfolio

NIHR portfolio

Non portfolio

Autoimmune Disease

8 2 8 4 10 5

Bone Disease 1 0 1 0 1 1

Rheumatoid Arthritis

6

1

Spondyl arthropathies

7

3

13

2

9

5

Pain Management /Pain CRPS

4

11

6

4

8

9

Rehabilitation Research

1

5

2

1

2

0

CFS/ME (children and adults)

0

4

0

4

0

4

Other

0 0 1 0 1 0

Total

21 25 31* 15 37* 25

*31 projects registered on the NIHR portfolio in 12/13 – only 22 recruiting in this period

*36 projects registered on NIHR portfolio in 13/14 – 29 projects actively recruiting.

39

NIHR PORTFOLIO STUDY RECRUITMENT

Activity Area 11/12 12/13 13/14

Auto-immune

96 38 40

Bone Disease

0 0 15

Inflammatory Arthritis/Spondylarthropathies

321 542 527

Pain Management/Pain

6 106 141

Rehabilitation Research

0 14 21

CFS/ME (children and adults)

0 0 0

Other

0 9 0

Total 433 709 744

RESEARCHERS/TRAINED STAFF

Total actively engaged in research

Health Professions Councils* 8

Clinical Psychologists 4

Psychotherapists 0

Doctors 11

Qualified Nurses 9

Music therapist 0

Other (Scientists, statistician etc) 2

Total 34

40

Appendix 5 - RNHRD National Representation Consultant Paediatricians Dr Esther Crawley

Deputy chair of the CFS/ME research collaborative. This is a national body

Medical Advisor for two charities: The Association for young people with ME and Kent and Sussex ME/CFS society.

Dr Jacqui Clinch • National Specialist Commissioning group for chronic pain services Consultant Rheumatologists Dr Tehseen Ahmed • Co-convenor/chair of the BSR Osteoporosis special interest group. Professor Neil McHugh • Medical Advisor to Psoriasis and Psoriatic Arthritis Alliance (PAPAA) from 1994 and Lupus UK

from 1999 • Medical advisor to grants committees Lupus UK from 2010 and International Myositis

Assessment and Clinical Studies Group Scientific Committee from 2010 – 2013 • Member of UK Systemic Sclerosis Study Group from 1992 • Scleroderma Clinical Trials Consortium from 1999 • British Isles Lupus Assessment Group (BILAG) from 1998 • British Association of Dermatology Biological Interventions for Psoriasis Guideline and Register

working group from 2004-2009 • GRAPPA international consortium (Group for Research and Assessment in Psoriasis and Psoriatic

Arthritis) from 2005 • NICE guideline development group for psoriasis 2010-2012 • NICE evidence update group for psoriasis from 2014 • ARMA standards of care for psoriatic arthritis from 2014 • Steering Groups including European Genetic consortium in Psoriatic Arthritis (PAGE) from 2008 ,

European Myositis Consortium from 2007 GRAPPA international consortium (Group for Research and Assessment in Psoriasis and Psoriatic Arthritis) from 2007-2010

• Deputy Chair ARUK clinical study group for inflammatory myositis 2008-2012 • BSR working group for revised guidelines for use of biologics in psoriatic arthritis from 2010-

2012 • ARUK clinical study group lead for spondyloarthropathy from 2012 Dr Raj Sengupta• RNHRD Research and Development Director • Co -chair of the BSR Spondyloarthritis Special Interest Group • Vice Chair of the BSR Informatics Group. • BSR Working Group on anti TNF guidelines in AS, member of the Arthritis Research UK

Spondyloarthritis (SpA) Clinical Studies Group • Member of the international axial SpA interest group, ASAS.

41

Dr John Pauling • Member of the UK Scleroderma Study Group, Scleroderma Clinical Trials Consortium and EULAR

Microcirculation Study Group. • Editorial Board for the journal Rheumatology. • Works closely with the Raynaud’s and Scleroderma Association and Scleroderma Society. Consultant Nurses Professor Candy McCabe, Consultant Nurse

Scientific advisor to Protégé DNA Ltd, Somerset House, London. Protégé is a national initiative in which young people who are excluded from mainstream education work with artists at Central Saint Martins College of Art to design their own education.

External committee membership includes:-

International Research Consortium for Complex Regional Pain Syndrome-Steering Committee member-2014-to present

Integrated Pain Management Health Intervention Team- Co-Director- 2014-to present

WEAHSN Evidence into Practice and Commissioning Evidence Based Care Reference Group-2014-present

British Pain Society Epidemiology of chronic pain working group-Theme lead 2013-present

International Association of Pain SIG Complex Regional Pain Syndrome- Chair 2012-present

British Pain Society Scientific Committee 2012 - present

Reflex Sympathetic Dystrophy Syndrome Association Scientific Committee, USA 2012 – present

Complex Regional Pain Syndrome UK Research and Clinical Network - Co-founder and Chair 2006- present

British Health Professionals in Rheumatology Scientific Research Group 2007- present Sister Sue Brown, Consultant Nurse, Connective Tissue Diseases • BHPR South West Lead Regional Representative April 2014 • Invited member of Arthritis Research UK group to identify research in reducing fatigue in

musculoskeletal disorders May 2013 • Invited member of the Arthritis Research UK Patient and Public Advisory Group June 2012 • Invited member of UK Scleroderma Health Professionals Network April 2012 • Invited member to BHPR Clinical Advisory Group September 2011 • Chair of non-medical prescribing group RNHRD and member of RUH non-medical prescribing

group • Chair of Lupus UK Nurses Network Group • Chair of Scleroderma UK and Ireland Multi-Disciplinary Network Group RCN Rheumatology Forum CTD Link Nurse South West • Convener for BHPR Connective Tissue Diseases Special Interest Group • Connective Tissue Disease nursing expert reviewer for peer-reviewed journals Musculoskeletal

Care and Nursing Standard • Medical Adviser to Raynaud’s and Scleroderma Association July 2014 Nurse representative • EULAR taskforce for recommendations for the management of family planning, assisted

reproduction, delivery and menopause in SLE and APS • Peer Reviewer for journals Psychology, Health and Medicine, Musculoskeletal Care Nursing Standard and Rheumatology

42

Specialist Nurses Deborah Bond, Rheumatology Specialist Nurse • Representative for BSR/BHPR SW region • Advisor for the RCN Rheumatology Forum • Proof reader for the ARUK patient information leaflets Allied Health Professionals Anne Johnson, Consultant Occupational Therapist

Invited by NHS England to consult on the emerging national rehabilitation standards project and is a member of the national Macmillan Allied Health Professions Learning and Development group to design the evolving Learning and Development support to therapists nationally

Member of the Department of Health’s AHP Expert Database for consultancy purposes

Member of Macmillan Cancer Support’s’ national AHP Workforce, Learning and Development Group (Invited) National Specialist Groups:

College of Occupational Therapists HIV, Oncology and Palliative Care Specialist Section

College of Occupational Therapists Work and Vocational Rehabilitation Specialist Section

College of Occupational Therapists Consultants Forum Nikie Catchpool, Consultant Occupational Therapist

• College of Occupational Therapists HIV, Oncology and Palliative Care Specialist Section

• College of Occupational Therapists Work and Vocational Rehabilitation Specialist Section • College of Occupational Therapists Consultants Forum

Sarah Wilson, Senior Physiotherapist

Education Officer for the Physiotherapy Pain Association (PPA)

Editorial Board Member for the Journal of the Physiotherapy Pain Association

Chair of the PPA working group developing a framework for competence for physiotherapists working in pain management (in partnership with the Chartered Society of Physiotherapy)

Alternate representative for physiotherapy with the British Pain Society Pain Management Programmes Special Interest Group

Sandi Derham, OT Clinical Specialist • Peer reviewer for the British Journal of Occupational Therapy. Clinical Scientists Dr Jacquie Shipley, Head of Clinical Measurement

Member of Bone Densitometry Training and Advisory Panel of the National Osteoporosis Society

Guest lecturer University of Bath, Medical Physics option.

43

Clinical Psychologists Dr Louise Tarrant • Specialist Clinical Psychologist has been a member of the working group updating the

Assessment of Pain in Older Adults National Guidelines on behalf of the British Pain Society and British Geriatric Society.

Denise Moorhouse, Service Manager, BRIRs • Member of the South West Cancer Steering Group on late effects