Research Matters (Issue 3 - April 2016)

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Research Matters

News from across NHS Research Scotland (NRS) Issue 3 | April 2016

Delivering Research Excellence Investing in cutting edge medical 3 Inform, Engage, Promote Upcoming events ...pages 4 - 9 Health Research Authority Approval in England and Cross-border Arrangements for local NHS R&D 9 A different perspective Role of the Young Persons Group 14 Much more inside...

NHS Research Scotland

An ambitious agenda... When ‘Delivering Innovation through Research’ was launched in October 2015 it set out ‘an ambitious agenda for change’ requiring new ways of working and a new approach to how we go about our business. Those changes and developments are designed to maintain Scotland’s position at the forefront of health research internationally. It includes major investments such as the establishment of the ‘Scottish Precision Medicine Ecosystem’ which you can read more about on Page 3. It also means adapting to changes in our systems and processes. The UKCRN Portfolio Database has been replaced with a new Central Portfolio Management System (CPMS). The system is set to enable users to access the full life-cycle of a study in a single location for the first time. The system went live on 31st March 2016 and training has been rolled out for Scottish National Portfolio Managers with more information available on Page 10. HRA Approval is another impactful change on our systems in Scotland. Dr Janet Messer, Director of Research Systems, Standards and HRA Approval Programme will be joining us in Glasgow on 27 April to share information on the recent roll-out of the HRA single approval process in England and what it means for cross -border studies. It will be an excellent opportunity for questions and discussion so we encourage you to attend with more details on Page 10. While it may be a period of change it is also a period of growth. Recruitment to SHARE continues at an impressive rate. Supported by Lorraine Kelly, TV celebrity and former rector of University of Dundee, SHARE smashed its 100k milestone in early March and continues to grow with over 106,000 people now signed up to support health research in Scotland.

harness engagement with stakeholders across NHS, academia, industry and third sector; and support our strong ethos of collaboration in Scotland. On 1 June 2016, NHS Research Scotland (NRS), Scottish Cancer Research Network (SCRN) and ABPI Scotland Cancer Industry Group (SCIG) will host the second Scottish Cancer Research Conference - Working with Industry. On 27 June, our Young Person’s Group (part of the Scottish Children’s Research Network) will travel to Barcelona to participate in the iCAN Research and Advocacy Summit. Over the coming months we also have an opportunity to promote our work to over 7500 event delegates from over 50 countries. Building on these opportunities is crucial so read more on Page 8 about how to get involved.

Planning is also well underway for the annual NHS Research Scotland conference taking place on 26 October 2016 (more on Page 5) and led by the Glasgow Clinical Research Facility, we are delighted to have successfully won the bid to host the 2017 UK Clinical Research Facility Conference (more on Page 8). It is a busy period and we have an ambitious agenda to deliver but strong progress through 2016 alone is evident, and we have much to be optimistic about.

NHS Research Scotland Strategy Board Mr Mike Stevens (Chair)

Head of Chief Scientist Office Professor Julie Brittenden

R&D Director, NHS Greater Glasgow & Clyde Professor Maggie Cruikshank

Acting R&D Director , NHS Grampian Dr Jacob George

R&D Director, NHS Tayside Professor Dave Newby

R&D Director, NHS Lothian

We also see growth in our programme of events, providing an opportunity to build and

NHS Research Scotland


In this edition: 

Major investments position Scotland as a centre of excellence in precision medicine on Page 3

European Conference on Rare Diseases comes to Edinburgh - Page 4

Plans underway to make the annual NHS Research Scotland conference the biggest and best yet read more on Page 5

Scottish Cancer Research Conference - Working with Industry will take place on 1st June in Glasgow - read more on Page 7

Beating Cancer: Ambition & Action - what action on research is proposed by Scottish Government’s new Cancer strategy - read more on Page 7

10+ events, 7500 delegates, 50 countries - read more on Page 8 about getting involved in our upcoming programme of external events

Health Research Authority Approval in England and Cross-border Arrangements for local NHS R&D permission - Page 9

Central Portfolio Management System launches - read more on Page 10

Clinical Research Specialty Group Lead roles available in Genetics/Rare Diseases, Critical Care and Dermatology - read more on Page 10

SHARE smashes 100k milestone - read more on Page 11

NHS Tayside commercial team are first in class on new addiction study - read more on Page 12

A different perspective - read more about the role of the Young Person’s Group and their upcoming adventure in Barcelona on Page 13

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Publication Dates Issue

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Summer (June/July)

3 June 2016

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5 October 2016

Winter (January)

16 December 2016

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Contributions from across the research


Investing in cutting edge medical research Major investments announced recently by the Scottish Government will help position Scotland as a centre of excellence in precision medicinef Precision medicine – combining increasing understanding of the molecular basis of diseases with knowledge about individual patients’ genetic and other molecular characteristics – can support more tailored treatment, improving the effectiveness and safety of healthcare. In January 2016, the First Minister announced £4 million investment for the establishment of a ‘Scottish Precision Medicine Ecosystem’ to co-ordinate precision medicine resources and opportunities across Scotland, bring together findings from individual research projects and improve information sharing to drive development.

The ecosystem will be supported by the Stratified Medicine Scotland Innovation Centre that will align NHS, academic and business assets, including NRS facilities, to drive developments in precision medicine.

SGP is a collaboration of Scottish Universities and the NHS capitalising on £15 million investment in whole genome sequencing technology by the Universities of Edinburgh and Glasgow. By combining knowledge of the whole genome sequence of patients and information from their health records, genetic diseases can be understood better and new ways to test, manage and treat these diseases devised. With the funding, SGP will be using this technology for genomic research on rare diseases, cancers and Scottish populations, and to work with Genomics England on the diagnosis of patients in Scotland with rare genetic diseases. SGP will be a cornerstone of the Scottish Precision Medicine Ecosystem.

The funding will also support two flagship precision medicine programmes on pancreatic cancer and multiple sclerosis.

For more about these investments see:

And in February 2016, the Minister for Sport, Health Improvement and Mental Health announced investment of £4 million from the Scottish Government and £2 million from the Medical Research Council in the Scottish Genomes Partnership (SGP).

NHS Research Scotland


Bringing together all rare diseases, across all European nations 8th European Conference on Rare Diseases and Orphan Products Taking place in Edinburgh from 26—28 May 2016, the 8th European Conference on Rare Diseases and Orphan Products (ECRD) provides a unique opportunity to connect with over 800 delegates from the rare disease community. The ECRD is the only event which unites all rare disease stakeholders from all European nations - patients and patient representatives, healthcare professionals and researchers, industry, payers, regulators and policy makers alike - in the fight against rare diseases. Six content themes will be presented over two days; from the latest research to developments in new treatments, innovations in healthcare, social care and support. NHS Research Scotland will be in attendance. For more information visit

7000+ rare genetic disorders affecting... Up to 300,000 people in Scotland...

3.5million throughout the UK... 30million throughout Europe

“Collaboration is crucial in the fight against rare diseases and Scotland has an important role to play in this. This conferences provides a platform to promote our research in clinical genetics and rare diseases, highlight the connected infrastructure in Scotland to support this research and engage with our partners across Europe� Jonathan Berg, Specialty Group Lead - Clinical Genetics, NHS Research Scotland


NHS Research Scotland Annual Conference Wednesday 26 October 2016 Queen Elizabeth Teaching and Learning Centre Now in its fifth year, the annual NHS Research Scotland conference is firmly established as Scotland’s leading clinical research conference, bringing together almost 500 delegates across NHS, academia, industry and third sector. The conference showcases the best examples of clinical research across Scotland and provides a key networking opportunity, capitalising on our strong ethos of collaboration in Scotland. Based on feedback from 2015 we are working to create an exciting and impactful agenda which will explore opportunities and challenges within the sector and demonstrate progress against the aims set out in Scotland’s health and social care research strategy - Delivering Innovation through Research (2015) , launched at last year’s conference. The programme will not only showcase our approach to emerging areas of science and successful delivery of high profile trials, but also explore our supporting infrastructures, initiatives, engagement with patients and the public, and our place on the international stage. Research also has an important part to play in planning the future of health and social care; and supporting delivery of Scottish Government’s 2020 Vision. As such our 2016 programme will also include a focus on broader health and social care research and our ability to link information from health, social care and non-health sources to support better treatment, safety and research. It will be a full programme demonstrating the strength of our research offering in Scotland and providing maximum opportunity for learning, discussion and networking. Contributions from the research community are encouraged and for the first year we are introducing both oral and poster submissions. We also have a range of exciting new developments planned, including an event app which will provide delegates with access to the most up to date information on speakers, presentations, biographies and exhibitors, from any mobile device, as well as doing our bit for the environment! With your support, we look forward to delivering the biggest and best NRS conference to date.

Stay up to date ... Our brand new conference website will launch in May and will act as the main portal for all conference information. You can also stay up to date via twitter:

@NHSResearchScot #NRSConf2016 Enquiries can also be sent to

NHS Research Scotland


Conference Themes In line with the overall aims of NHS Research Scotland the main conference theme will be Delivering Research Excellence. The supporting programme is being designed around key themes from the health and social care research strategy: 

Trials 1

International Partnerships

Trials 2

Health and Social Care Research

Precision Medicine

A Changing R&D landscape


Partnership with Scottish Patients and Public

(titles are subject to change)

Get involved For 2016 we invite the research community to submit abstracts for both poster and oral presentation. Authors are invited to submit 300 word abstracts for inclusion under the conference themes detailed above. Submissions can be completed via the conference website when it launches in May and deadline for submission will be 30 June 2016. Regular updates will be communicated via the newsletter and twitter and successful authors will be notified late summer.

Exhibitors For 2016 more time in the programme will be included for delegates to browse the exhibition area and network with key stakeholders in attendance. Exhibition bookings can be made via the conference website when it launches in May.

Travel For 2016 return coach transfers will run to and from Queen Street Station and Central Station. This option will be available to select during the registration process.


Scottish Cancer Research Conference Working with Industry 1st June 2016, Radisson BLU Glasgow The Scottish Cancer Research Conference - Working with Industry is back for 2016, and builds on the success and positive feedback from the inaugural conference in held in May 2014. The conference will bring together delegates from NHS, patient representative groups, industry and academia. Using this combined expertise, key opportunities and challenges will be identified to improve patient access to innovative cancer trials in Scotland. An exciting agenda, presenting the strong ethos of collaboration in Scotland has been created with a focus on Scottish cancer research in the global market.

Register to attend NHS Research Scotland NRS), Scottish Cancer Research Network (SCRN) and ABPI Scotland Cancer Industry Group (SCIG) have worked in partnership for three years as the Scottish Cancer Research Working with Industry Forum. The forum identifies challenges and develops collaborative solutions around conducting clinical oncology trials in Scotland. The aim of the forum is to increase both the quality and quantity of clinical cancer research and improve cancer patient outcomes through increased access to innovative cancer trials in Scotland.

Beating Cancer: Ambition and Action On the same week the Scottish Cancer Research Conference was announced, the Scottish Government also launched ‘Beating Cancer: Ambition and Action’.

“We know that a researchactive health service delivers better outcomes and we are working to embed research in the ethos of our healthcare system”

The £100 million strategy, to tackle cancer by improving prevention, detection, diagnosis, treatment and after care, will serve as the blueprint for cancer care in Scotland over the next five to ten years. With a specific chapter focussed on research, actions noted are: 

We will build on our research expertise and investments in precision medicine by funding two research exemplars in ovarian and pancreatic cancer, progressing genetic understanding of these diseases and supporting the adoption of genome-based treatment into the NHS

We will work with the UK regulatory authority to introduce greater flexibility in the clinical trials activities that can be undertaken away

NHS Research Scotland

from the core site, allowing people with cancer across Scotland greater access to studies being led from the central belt 

We will continue to invest in cancer research infrastructure, and will work with Cancer Research UK to support the continuation of the Experimental Cancer Medicines Centres for a further 5 years. Read more at


Winning bid... Glasgow to play host to UKCRF 2017 The Glasgow Clinical Research Facility, supported by NHS Research Scotland and Glasgow City Marketing Bureau, has successfully won the bid to host the 13th Annual UK Clinical Research Facility Conference. The Conference will take place over 2 days - from Thursday 6 until Friday 7 July 2017 at SECC, Glasgow. A conference dinner will also take place at Kelvingrove Art Gallery & Museum.

Plans are now underway to deliver an exciting agenda and social programme. Look out for more information over the coming months!

Spreading the word... 10+ events...with a reach of 7500+ delegates...from 50+ countries NHS Research Scotland have an exciting programme of events over the coming months. A full calendar is available at If you wish to get involved via attendance, provision of materials or simply want further information contact ABPI Better Outcomes, 21 April, Reproductive Health and Childbirth Research in Scotland, 26 April, Stirling Management Centre BSR Rheumatology 2016, 26—28 April, SECC, Glasgow 11th Convergent Technology Showcase & Conference, 11 May, Glasgow Annual R&D Forum Conference 2016, 23—24 May, Stratford Upon Avon Bio Dundee Conference, 24 - 25 May, Dundee 8th European Conference on Rare Diseases & Orphan Products, 26—28 May, EICC, Edinburgh East of Scotland Research Ethics Service Conference, 20 May, Crieff Hydro, Perth Dementia Awareness Week - National Conference, 3 June, EICC, Edinburgh NHS Scotland Event, 15 - 16 June, SECC, Glasgow


Health Research Authority Approval in England and Cross-border Arrangements for local NHS R&D permission As part of the roll out of Health Research Authority (HRA) Approval in England, operational and policy leads from the 4 Nations have worked closely to ensure compatibility of NHS research approval systems across the UK. As part of this, over the next 6 months, the 4 Nations have committed to review the information required for study approval/confirmation of capacity and capability at the local NHS site level. This is with the aspiration of coming to a common UK position, that supports the timely set-up of studies and that meets the needs of sponsors, research sites, NHS patients and service users. This review will be facilitated through a series of workshops involving operational and policy leads from across the UK. Until further UK-wide guidance on local information can be agreed and issued, the interim position for management of local NHS site information is as follows. 

Site Specific Information (SSI) forms will continue to be used for setting up studies in the devolved administrations (DAs).

The above includes research studies that are sponsored/led from England with research sites in a DA, where the DA will continue to use SSI forms.

Where research studies are sponsored/led from a DA with sites in England : 

The HRA will accept SSI forms

The HRA Approval team will facilitate the completion of any additional information requirement in England in order to review the study and will confirm with the sponsor

Sponsors from a DA (or authorised delegates) are advised to contact the HRA at the earliest opportunity so that the HRA Approval team can facilitate the review of the research study for English sites.

The above arrangements will be reflected in updates to operational guidance documents, including the HRA Approval Q&A.

that the information is correct

NHS Research Scotland


Find out more about HRA Approval… 27 April 2016, West Glasgow Ambulatory Care Hospital To share information on the recent roll-out of the HRA single approval process in England and what it means for cross-border studies, Dr Janet Messer, Director of Research Systems, Standards and HRA Approval Programme, will be coming to Scotland on 27th April to give a presentation from 12-2pm at the Medi Cinema within the West Glasgow Ambulatory Care Hospital. This meeting will provide an ideal opportunity for questions and answers and although the talk will be of broad interest to the research community, we anticipate that the meeting will be of particular interest to anyone who is involved in seeking approval for studies with sites in England, such as project managers of Scottish academic sponsors for studies with English sites. To register your interest email: detailing your Name, Job Title and Health Board. Confirmation will be circulated in advance of the event.

Central Portfolio Management System (CPMS) launches The Central Portfolio Management System (CPMS) replaces the UKCRN Portfolio database. The system went live on 31st March 2016. Training was held for Scottish National Portfolio Managers on 1st April 2016. Further guidance, materials and ability to set up an account is available at Study Support Service helpdesk: / 0113 343 4555

Clinical Research Specialty Group Lead roles Applications by 6 May 2016 The Chief Scientist Office (CSO) of the Scottish Government is seeking applicants for three Clinical Research Specialty Group Lead roles. These part-time posts are open to medical consultants working in Scotland with a research interest in one of the following areas:   

Clinical Genetics/Rare Diseases Critical Care Dermatology

Applications, comprising a brief CV and cover letter should be submitted to by the closing date of 5pm on Friday 6th May 2016. Interviews will be held in St Andrew’s House, Edinburgh in the latter part of June 2016. Please contact Dr Alan McNair on 0131 244 8494 if you would like to discuss further prior to application. Further information on each Specialty Group and job description available at

Posts are for 0.1 FTE/1 PA, and will be for three years in the first instance.


...celebrates 100,000 milestone!

Television presenter – and former Rector of the University of Dundee – Lorraine Kelly became the 100,000th volunteer to join our Scotland-wide effort to help shape the medicines of the future. SHARE (The Scottish Health Research Register) has been steadily working towards the 100,000 milestone with launches in Edinburgh and Glasgow over the past year. The register now sits at over 106,000 sign-ups. The initiative, aims to make it easier for researchers to identify potential recruits from Scotland to carry out ground breaking medical research. SHARE also seeks consent to use blood left over from routine testing to help improve treatments for diseases such as Cancer, Diabetes, Alzheimer’s and Asthma.

Lorraine Kelly said, “I am delighted to be part of this pioneering health initiative. It is important that everyone gets an opportunity to help medical research. “Scottish health researchers have always provided ground breaking new treatments that have transformed global health. This is our chance to help develop the next generation of treatments for a healthier Scotland.” Find out how SHARE can support recruitment to your research study or sign up at You can also follow progress on twitter @register4share

“It is important that everyone gets an opportunity to help medical research…” Lorraine Kelly 100,000th SHARE sign up

SHARE assists on largest study to date... Nearly 50,000 people from the SHARE register have been invited to participate in a European study which aims to improve the way that health information is presented as research evidence. The study is being carried out by the Health Services Research Unit at the University of Aberdeen, in conjunction with researchers from Norway, Spain and Chile. Find our more at

NHS Research Scotland


NHS Tayside are 1st in class Research support on new study portfolio NHS Tayside commercial team, led by Dr Steve McSwiggan, have excelled in delivery of a multicentre opioid addiction study taking place across Europe and Asia Pacific, exemplifying the support available through our R&D offices. Building strong relations with the study team has been a defining feature of the trial, helping to share knowledge and expertise to deliver best outcomes for patients.

First randomised UK patient

Approximately 160 patients are to be enrolled worldwide on the study, 22 within the UK. NHS Tayside successfully screened and randomised the first UK patient in February 2016 – just beaten to 1st in world by Denmark who boast a strong addictions portfolio.

First substance misuse commercial trial

With no previous track record in substance misuse commercial trials in Dundee, the commercial research team worked collaboratively with the Principal investigator, to get the study site up and running.

“It’s an impressive display of what TASC can do to help researchers on these trials – we have achieved great success through strong collaborative working” Dr Steve McSwiggan, Head of Commercial Research Services, NHS Tayside


A different perspective… The Young Persons’ Group act as advocates for young people participating in medical research in Scotland To support patient and public involvement in the Scottish Children’s Research Network, the Young Person’s Group was set up. The group: 

Comprises 18 young people aged 11 – 17 years

Meets at least 8 times per year

Have received training in Clinical Trial Design, Research Ethics, Research Governance, Information Sheets

Comment on and redraft patient documentation, questionnaires and posters

Discuss ethics of research and who should consent and assent

Talk with doctors and researchers about their future research and what is important to young people. Our comments and suggestions improved a questionnaire for young people and resulted in a 49% response rate (780 15 year-olds responded!)

Feedback provided on National Research Ethics Guidelines Very positive feedback from researchers on our redrafting of patient information sheets

NHS Research Scotland

Our input has helped make patient documents more age appropriate and relevant


iCAN is a worldwide consortium of children's advisory groups working together to provide a voice for children and families in health, medicine, research, and innovation through synergy, communication and collaboration. The network now includes 17 active chapters across 6 countries - USA, Canada, Spain, France, Australia and UK, including The Scottish Young Person’s Group, with Network Manager Pamela Dicks a member of the iCAN Board. Representatives of The Scottish Young Person’s Group (8 young members, 2 staff and 1 parent) have been sponsored by iCAN to travel to Barcelona on 27 June to participate in the 2016 iCAN Research and Advocacy Summit. The annual summit which draws around 150 youth, parent and team advisors will focus on nutrition, healthy lifestyle, and empowering young people to take part in medicine, research, and innovation.

It provides a world-class learning opportunity enabling young people and their families to engage with paediatric professionals in healthcare, research, industry, academic and regulation.

iCAN has partnered with Sant Joan de Déu Children's hospital in Barcelona, and along with the local KIDS Barcelona chapter, have built an exciting and impactful agenda.

Follow the International Children's Advisory Network on Twitter, Instagram, and Google +, and search the event hashtag #iCANSummit2016 for live updates.

“The Young Person’s Group is a great resource for researchers. They are a very knowledgeable, committed and enthusiastic group who can add real value to research projects. “Gaining international recognition through our work with iCAN is hugely important. We attended our first international meeting in Washington last year and it provided a great learning opportunity, so we are all very excited for the Summit in Barcelona and the opportunity to hear about the amazing work at Sant Joan de Déu Children's hospital” Pamela Dicks, Children’s Network Manager

Get in touch with the Young Person’s Group… The Young Person’s Group can provide a range of support to ensure clinical research material is age appropriate and contains the information young people need and want to make informed decisions about their participation in your trial. The service is FREE and available to all researchers.

For more information contact: Pamela Dicks Children’s Network Manager 01224 438474 /


NHS Research Scotland (NRS) is a partnership of Scottish NHS Boards and the Chief Scientist Office of Scottish Government. Registered Number: GB 236303. Registered address: The Golden Jubilee National Hospital, Fourth Floor East, Agamemnon St, Clydebank, G81 4DY Published by NHS Research Scotland. All rights reserved. Material contained in this publication may not be reproduced in whole or part without prior permission of NHS Research Scotland (or other copyright owners). While every effort is made to ensure that the information given here is accurate, no legal responsibility is accepted for any errors, omissions or misleading statements. NRS/2016/04