R&D Annual Report 1314 - Royal National Hospital for Rheumatic

Royal National Hospital
for Rheumatic Diseases
NHS Foundation Trust
Research and Development
Annual Report 2013-2014
Prepared by Jane Carter and Janine McCaulder-Ojeda
R&D office
CONTENTS
3
1.0
1.1
1.2
Introduction - Overview of the year
Research Infrastructure
External Income
2.0
2.1
2.2
Research Projects
NIHR portfolio projects
Non-NIHR projects
3.0
3.1
NIHR Portfolio recruitment 13/14
Non portfolio recruitment 13/14
4.0
4.1
4.2
4.3
Financial Summary
Grants Awarded from Charities/Pharmaceutical co
Commercial Clinical Trials
Western Comprehensive Local Research Network
5.0
Research Dissemination
10
6.0
Future Plans to build research
11
7.0
Research Governance
8.0
9.0
9.1
9.2
9.3
Research Support Group meetings
Impacts of Research Bath
Bath Centre for Pain Services
Connective Tissue Disease
Spondylarthropathy
10.0 National Representation
11.0 Progress against annual objectives 13/14
3
5
5
5
6
8
9
9
9
10
12
12
13
13
13
13
13
14
15
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
5National Representation
16
23
24
35
40
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 noncommercial 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:
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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
3
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vacant partly due to a lack of funding but it is hoped that the post can be re-instigated in 1415 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.
4
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.
Total Research income
2011-2012
£1,125,977
£505,053
2012-2013
£1,149,00
£461,844
2013-2014
£971,909
£495,743
£20,924
£103,023
£78,413
£446,087
£363,235
£34,161
£34,518
Research Network Funding
Research Capability Funding
R&D grant income
Commercial Trial Income
Circa £600,00
Not available
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.
5
Figure 1 - RNHRD Number of
active NIHR Portfolio and NonPortfolio 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).
6
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.
7
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 nonportfolio recruitment, however we are now required to collect this information via the EDGE database
system.
8
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
£2,073.086
£446,087
2013-2014
£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.
9
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.
10
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
11
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7.0
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.
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:
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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.
12
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9.0
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.
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
13
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 1 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
nd
due to end of NIHR i4i grant in 2 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 1 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
nd
ensure integrated use of Day unit on 2 floor for
infusions when completed.
st
st
14
12.0 Pictorial representation of research themes at the RNHRD Trust
RNHRD
Research
Rheum
atology
CTD
RA
PsA/
AS
Adult
Adult
Adult
Pain
Bone
CRPS
Adult
Paed
iatric
CFS
Pain
Manag
ement
Adult
Adult
Paedi
atric
Paed
iatric
Active research including NIHR Portfolio studies
No NIHR Portfolio research – some areas have non-portfolio
15
APPENDIX 1 – ACTIVE RESEARCH PROJECTS 2013-2014
AUTO-IMMUNE DISEASE
Project
ID
Portfolio
Start
End
Project Title
Researcher
Grant Funder
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
31/10/2019
Investigating genes in patients with polymyositis
and dermatomyositis. Multi-centre project to
identify and characterise the disease susceptibility
genes
RBB
322
YES
01/10/2009
RBB
335
YES
01/07/2010
01/01/2014
RBB
336
YES
19/02/2010
19/02/2016
Observational study of early diffuse SSc
Multi-centre project to examine the effectiveness of
different immunosuppressant drugs currently
favoured by doctors treating scleroderma.
BILAG Biologics prospective cohort. Multi-centre
project to assess if new biological treatments for
Lupus patients have any side effects
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
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.
30/03/2013
Non-coding RNAs in inflammatory myositis – Multicentre 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.
RBB
367
NO
30/01/2012
Prof Neil
McHugh
NIHR Research
support costs
Prof Neil
McHugh
Overall project
£623,062.
EULAR
Prof Neil
McHugh
NIHR Research
support costs
Prof Neil
McHugh
NIHR Research
support costs
Prof Neil
McHugh
University of
Leeds
Dr Phil
Hamann
£6,000 RNHRD
Charitable Funds
Outputs
2 conference
presentations, see
Appendix 3 (23&24)
1 published paper,
Appendix 3 (7)
2 conference posters,
Appendix 3 (15 & 16)
16
AUTO-IMMUNE DISEASE
Project
ID
RBB
369
RBB
390
RBB
394
RBB
398
Portfolio
N0
YES
YES
NO
Start
01/12/2013
07/02/2013
01/07/2014
28/02/2013
End
30/08/2014
01/11/2022
31/05/2014
Project Title
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.
Sequencing based analysis of SLE. Multicentre project with King’s College London
looking at the genetic basis of systemic
lupus erythematosus (SLE).
Immunogenetic Factors in Primary
Systemic Vasculitis. Multi-centre study to
investigate the possible genes responsible
for vasculitis.
RNHRD Charitable
Funds £6,000
Prof Neil
McHugh
Prof Neil
McHugh
Prof Neil
McHugh
Dr Eva Lange
YES
30/09/2013
09/07/2015
RBB
418
NO
01/12/2013
30/08/2014
Myositis Validation Scale – RNHRD led
study to validate the RNHRD’s muscle
myositis validation scale
30/09/2014
Fatigue Fingerprints in primary sjogrens
syndrome. To identify a biological
“signature” of fatigue
24/03/2014
Dr Phil Hamman
30/11/2013
RBB
404
YES
Grant Funder
Microvascular imaging in Raynaud’s
phenomenon
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
RBB
425
Researcher
Dr J Pauling
Prof Neil
McHugh
Outputs
NIHR Research
support costs
NIHR Research
support costs
N/A
2 poster presentations Appendix 3
(19&22)
NIHR Research
support costs
RNHRD Charitable
Funds £6,000
NIHR Research
support costs
17
BONE
Project
ID
Portfolio
Start
End
RBB
386
YES
01/02/2013
31/01/2015
RBB
415
NO
16/10/2013
31/07/2014
Project Title
Researcher
Grant Funder
Pilot Study: Osteoporosis treatment on fat
metabolism. To assess the effect of commonly
used parenteral osteoporosis treatments on fat
metabolism and glucose
Bone mineral density measurement in adolescent
patients with Anorexia Nervosa: Friend or Foe?
Dr Ashok
Bhalla/Jackie
Webb
NIHR Research
support costs
Dr Bhav Vasta
N/A
Outputs
1 poster presentation
Appendix 3 (101)
CHRONIC FATIGUE SYNDROME
Anna Taylor
(University of
Bath)
Roxanne
Potgeiter,
University of
Bristol
RBB
412
NO
31/05/2013
30/05/2014
Why do young people with CFS/ME become
depressed? (Student project)
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)
RBB
414
NO
01/09/2013
01/09/2015
Experiences of men with CFS/ME
Anne Johnson
N/A
Bath CRPS research database
Prof Candy
McCabe
NIHR Research
support costs
Dr Jane
Hall/Prof C
McCabe
£14,536
Prof Candy
McCabe
Part of c£500k
NIHR Fellowship
N/A
N/A
2 published papers
Appendix 3 (33 & 34)
PAIN – COMPLEX REGIONAL PAIN SYNDROME
RBB
265
RBB
297
RBB
330
NO
01/06/2006
01/02/2021
NO
01/03/2008
01/03/2043
YES
01/07/2010
30/12/2013
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.
Understanding sensorimotor integration and its
role in pain
1 published paper
Appendix 3 (42)
18
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
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 Prof Candy
patients with CRPS define recovery
McCabe
RSDA $117,000
Abstract submitted and accepted to
attend the IASP, Buenos Aires 2014.
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)
Dr Darren
Hart
£5,459 RNHRD
Charitable Funds
Abstract submitted and accepted for
conference, Glasgow September 2014.
Dr Jacqueline
Bailey
£5,918 RNHRD
Charitable Funds
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
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
RBB
396
YES
01/06/2013
RBB
421
NO
06/01/2014
29/09/2014
RBB
420
NO
03/02/2014
01/07/2015
RBB
391
YES
RBB
408
NO
01/03/2013
01/08/2013
ibuttons in CRPS. To investigate variations in
temperature differences between unaffected and
affected limbs in CRPS
Dyads in CRPS. To discover the patterns of
communication/ collaboration between someone living
with CRPS and their support partner.
1 published paper Appendix 3 (40)
1 conference poster Appendix 3 (51)
19
PAIN – PAIN MANAGEMENT
Project
ID
Portfolio
Start
End
RBB
411
NO
01/05/2013
30/09/2013
RBB
410
NO
29/08/2013
29/08/2014
RBB
412
NO
01/02/2014
30/09/2014
RBB
402
Yes
01/03/2014
30/09/2014
RBB
430
No
01/06/2012
RBB
377
NO
01/06/2012
Project Title
Researcher
Grant Funder
Emma Fisher
N/A
Dr Faith Martin
(University of Bath)
N/A
Dr Hannah Connell
RCF £13,863.84
SPACE – To find ways to help parents support their
children after a diagnosis of arthritis
Dr Hannah Connell
NIHR Research
support costs
01/06/2013
Staff attitudes of chronic pain patients in A&E
Dr J GauntlettGilbert
Donated Funds
£1,700
30/05/2015
BCPS database
H Connell/J
Gauntlett-Gilbert
N/A
Dr Nicola Walsh
(UWE)
N/A
Anxiety Profiles in adolescents with and without
chronic pain (student project)
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
Autistic Spectrum Disorders and Chronic Pain in
Childhood
Outputs
RHEUMATOID ARTHRITIS
RBB
378
NO
04/06/2012
27/12/2013
Facilitating Activity and Self-Management in Arthritis
RBB
338
YES
04/01/2010
Ongoing
BRAGGS – Predictors of response to biologics
RBB
YES
19/02/2010
19/02/2016
Toxicity from Biologic Therapy
Dr John Pauling
RC46
YES
30/09/2011
30/09/2014
Multi-centre observational clinical trial in RA
Dr John Pauling
RBB
398
YES
01/08/2015
SWTCH –To find out the best treatment for RA
patients who haven’t benefited from an initial antiTNF drug
Dr John Pauling
01/07/2013
Dr John Pauling
NIHR Research
support costs
1 published paper Appendix 3 (70)
NIHR Research
support costs
Commercial trial
sponsored by
UCB
1 published paper Appendix 3 (70)
NIHR Research
support costs
20
RHEUMATOID ARTHRITIS
Project
ID
Portfolio
Start
End
Project Title
Researcher
Grant Funder
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
30/03/2012
30/08/2013
Hypermobility Perspectives on Physiotherapy
(HPOP). to explore hypermobility patients views on
physiotherapy.
Physiotherapy for Hypermobility Trial (PHyT) To test
whether a course of physiotherapy is any better than
giving detailed advice about managing joint
hypermobility
Dr Tim
Jenkinson,
Sin-Ti Towlson
University of the
West of England
£10k
Sin-Ti Towlson
As above
Outputs
REHABILITATION
RBB
381
YES
RBB
397
YES
01/05/2013
30/06/2015
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
RBB
346
YES
01/06/2011
31/12/2014
LOPAS 2 – Long-term outcomes in Psoriatic Arthritis
Dr William Tillet
Abbvie
RBB
351
NO
01/10/2011
01/04/2013
AXIAL SpA – MRI study
Dr Sengupta
RBB
363
YES
01/11/2011
ONGOING
Genetics of AS
Dr Sengupta
06/08/2014
ADIPSA – A study to help us understand the
similarities and differences between PsA and AS
RBB
376
YES
01/08/2012
Dr Jadon
Pfizer Investigator
Initiated Research
Grant
£89,440
NIHR Research
support coss
Pfizer Investigator
Initiated Research
Grant
£153,600
1 published paper Appendix 3 (79)
2 conference posters Appendix 3
(87&88)
3 published papers Appendix 3
(84,85,86)
1 conference poster Appendix 3 (93)
1 conference poster Appendix 3 (89)
1 oral presentation Appendix 3 (99)
21
SPONDYLARTHROPATHY
Project
ID
Portfolio
Start
End
Project Title
Researcher
Grant Funder
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
Dr Deepak Jadon
N/A
RBB
400
NO
01/06/2013
01/07/2014
Prognostic markers in juvenile vs. adult-onset ankylosing
spondylitis
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
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
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
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.
Outputs
1 published papers
Appendix 3 (81&82)
2 conference posters
appendix 3 (90,91,92)
See Adipsa
OTHER
Sandi Derham
2 published papers
(including a
systematic review (102)
N/A
22
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
Pfizer
ARUK Education Grant
£35,000
£6,933
Spondylarthropathy
BASMI Kinect Project
Funding for a post doctoral research fellow to assess work
disability in AS
Identifying the current knowledge and confidence of
rheumatology nurses in providing advice on pain
management.*
Psychologically Informed Physiotherapy (PIP) for Chronic Pain:
patient experiences of treatment and therapeutic process
Chartered Society of
Physiotherapist Research
Foundation Trust
£17,519
Dr Raj Sengupta
Professor Candy McCabe (coapplicant) grant to be held by
University of West of England
Sarah Wilson
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.*
Pain
Pain
Total = £1,659,662.17

Grants administered via the University of the West England
23
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)
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
rd
following success through to the 3 review stage
March 2013
£21,124
Professor C
McCabe/
Alison
Llewellyn
Pain
RfPB Non-pharmacological interventions for Painful
Diabetic Neuropathy (PDN)
Work in progress, application to be submitted in the
autumn 2014.
RfPB Delivering a tailored multi-disciplinary
rehabilitation programme for those with breast
radiotherapy late effects
Pilot work in progress which has been funded by
RNHRD Charitable Funds. Long-term plan is to apply
for an NIHR RfPB.
Programme Development Grant. Prevention and
optimal management of post-surgical/trauma
chronic pain
Work in progress to apply for a NIHR programme
grant. Application to be submitted in October 2014.
In progress
Total
£52,986.80
*RCF is also used to support R&D sponsorship duties
24
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?
October
2013
£5459
Dr Darren Hart
Pain
Ambulatory skin temperature asymmetry
measurement using the ibutton with complex
regional pain syndrome.
Project in progress. The donated
funds research will form the
platform for submitting an NIHR
application in the future.
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
October
2013
£6,000
Dr Phil Hamman
Auto-immune
Validation of the Myositis Muscle Dysfunction
Scale (MMDS) in adult patients with
polymyositis and dermatomyositis
Phenotypic changes in muscle cells occur as a
result of chemokine signalling.
November 2013
£2,200
November 2013
£5918
Spondylarthropathies
Pain
November 2013
£1,700
Dr Raj Sengupta/Zoe
Betteridge
Dr Jacquie Bailey/Prof
Candy McCabe
Dr Jeremy Gauntlett-Gilbert
Pain
Defining novel auto-antibodies in serum
samples from patients with AS.
The challenges of pain management in a CRPS
dyad
Investigating treatment non-response in an
adult chronic pain population.
Project in progress. Expected
project end date is November
2014.
Dr Hamman has been awarded a
BSR fellowship to support his
PhD.
Project in progress
Project in progress
Project in progress
Total £32,528
25
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
13
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
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.
26
Autoimmune – Conference Posters/Abstracts
14
23
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.
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
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
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
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.
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.
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
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
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.
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
15
16
17
18
19
20
21
22
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
27
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: 10.1186/17456215-14-444.
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
31
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
Fisher H, Crawley E. Why do young people with CFS/ME feel anxious? A qualitative study. Clin Child Psychol Psychiatry. 2013; 18:556-573
35
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
28
Pain – Complex Regional Pain Syndrome – Book Chapters
th
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 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
41
42
43
44
45
46
47
48
49
50
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
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
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
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
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
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
McCabe CS. Rehabilitation of Complex Regional Pain Syndrome: evidence based or trial and error? Pain Management 2013; 3 (2):147-15
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.
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
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
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
29
Pain (CRPS) - Conference Posters/Abstracts
51
52
53
54
55
56
57
58
59
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
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
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
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
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
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
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.
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
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
30
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
72
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.
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
31
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
76
77
78
79
80
81
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
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
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.
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
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
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.
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
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.
82
Sykes M, Doll, H, Sengupta R, Gaffney K. Delay to diagnosis in AS: are we improving? i143. Rheumatology 2014. Vol 53. Supplement 1
83
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
32
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
89
90
91
92
93
94
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
Jadon D. Systematic Review: Serum biomarkers in PsA. GRAPPA annual meeting, Toronto Canada, July 2013
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.
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
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.
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
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
97
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
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
33
Spondylathropathies – Oral presentations
98
99
100
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
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
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
th
 ‘Update in AS’ – 7 May 2013, Leicester
 MRI training for rheumatologists – chair - 8th May 2013, Bath
th
 Back in Focus - ‘Inflammatory back pain’, 7 June 2013, Manchester
th
 NASS Annual AGM - ‘Whats new in AS’, 29 June 2013, Birmingham
th

Back Pain Seminar for GPs - ‘How to investigate back pain’ 4 July 2013, Manchester
nd
 ‘Axial Spondyloarthritis’, 2 October 2013, Scottish Parliament, Scotland

Visiting Danish Rheumatologists - ‘AS: an update’ - October 13th 2013 Bath
th

Back Pain Seminar for GPs - ‘How to investigate back pain’ 28 November 2013, London
th

Back in Focus - ‘Inflammatory back pain’, 5 December 2013, London
st
 Don’t turn your back on it International Summit – ‘Reaching people with IBP living across Europe’ 21 January 2014, London
th

‘Diagnosis Issues in axial spondyloarthritis’ – 14 February 2014, Manchester
th

‘Joint injection techniques for GPs’ – 4 March 2014, Frome
Other- Published papers
101
102
Vasta B, Shipley J, Hart D, Webb J, Bhalla A. Lumbar spine dual x-ray absorptiometry findings in adolescent females with anorexia nervosa.
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
34
Appendix 4
Royal National Hospital for Rheumatic
Diseases
Research Key Critical Indicators
Financial Years 2011/12, 2012/13, 2013/14
35
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
36
CRITICAL INDICATORS
PUBLICATIONS
Auto
immune
Bone
Disease
Spondylarthropathy
Pain and
Pain
Management
CFS
Rheumatoid
Arthritis
11
12
13
11
12
13
11
12
13
11
12
13
11
12
13
11
12
13
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
Management
41 12 19
5
1
1
0
0
2
Books/
1
0
2
0
0
1
0
0
2
2
1
3
0
0
0
0
0
0
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
Papers
Chapters/
Editorials/
Letters&
Media
Broadcasting
ALL ACTIVITY AREAS
Financial Year
2011
2012
2013
Papers
51
38
46
Abstracts/Presentations
90
64
69
Books/Chapters/Editorials/Lett
ers
Presentations
Media & Broadcasting
5
1
6
8
2
1
37
PROJECTS
70
Portfolio vs Non-portfolio
studies 3 year period
60
50
25
40
30
15
25
20
37
31
10
21
0
2011-2012
2012-2013
Portfolio
Financial Year
Autoimmune
Disease
Bone Disease
Rheumatoid
Arthritis
Spondyl
arthropathies
Pain
Management
/Pain CRPS
Rehabilitation
Research
CFS/ME
(children and
adults)
2013-2014
Non-portfolio
11/12
12/13
NIHR
Portfolio
8
Non
portfolio
2
1
0
NIHR
portfolio
8
1
13/14
Nonportfolio
4
0
NIHR
portfolio
10
Non
portfolio
5
1
1
6
1
7
3
13
2
9
5
4
11
6
4
8
9
1
5
2
1
2
0
0
4
0
4
0
4
0
0
1
0
1
0
21
25
31*
15
37*
25
Other
Total
*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.
38
NIHR PORTFOLIO STUDY RECRUITMENT
Activity Area
11/12
12/13
13/14
Auto-immune
96
38
40
Bone Disease
0
0
15
321
542
527
6
106
141
Rehabilitation Research
0
14
21
CFS/ME (children and adults)
0
0
0
Other
0
9
0
Total
433
709
744
Inflammatory
Arthritis/Spondylarthropathies
Pain Management/Pain
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
39
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 20102012
•
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.
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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 Group2014-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
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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.
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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
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