Research Matters News from across NHS Research Scotland (NRS)
Issue 3 | April 2016
Delivering Research Excellence
Investing in cutting edge medical research...page 3
Inform, Engage, Promote Upcoming events ...pages 4 - 9
Health Research Authority Approval in England and Cross-border Arrangements for local NHS R&D permission...page 9
A different perspective Role of the Young Persons Group ...page 14
Much more inside...
NHS Research Scotland www.nrs.org.uk An ambitious agenda...
When ‘Delivering Innovation through Research’ harness engagement with stakeholders across was launched in October 2015 it set out ‘an NHS, academia, industry and third sector; and ambitious agenda for change’ requiring new support our strong ethos of collaboration in ways of working and a new approach to how Scotland. we go about our business. On 1 June 2016, NHS Research Scotland (NRS), Those changes and developments are Scottish Cancer Research Network (SCRN) and designed to maintain Scotland’s position at the ABPI Scotland Cancer Industry Group (SCIG) forefront of health research internationally. will host the second Scottish Cancer Research Conference - Working with Industry. On 27 It includes major investments such as the June, our Young Person’s Group (part of the establishment of the ‘Scottish Precision Scottish Children’s Research Network) will Medicine Ecosystem’ which you can read more travel to Barcelona to participate in the iCAN about on Page 3. Research and Advocacy Summit. Over the It also means adapting to changes in our coming months we also have an opportunity to systems and processes. The UKCRN Portfolio promote our work to over 7500 event Database has been replaced with a new delegates from over 50 countries. Building on Central Portfolio Management System (CPMS). these opportunities is crucial so read more on The system is set to enable users to access the Page 8 about how to get involved. full life-cycle of a study in a single location for Planning is also well underway for the annual the first time. The system went live on 31st NHS Research Scotland conference taking March 2016 and training has been rolled out place on 26 October 2016 (more on Page 5) for Scottish National Portfolio Managers with and led by the Glasgow Clinical Research more information available on Page 10. Facility, we are delighted to have successfully HRA Approval is another impactful change on won the bid to host the 2017 UK Clinical our systems in Scotland. Dr Janet Messer, Research Facility Conference (more on Page 8). Director of Research Systems, Standards and It is a busy period and we have an ambitious HRA Approval Programme will be joining us in agenda to deliver but strong progress through Glasgow on 27 April to share information on 2016 alone is evident, and we have much to be the recent roll-out of the HRA single approval optimistic about. process in England and what it means for cross -border studies. It will be an excellent NHS Research Scotland Strategy Board opportunity for questions and discussion so we Mr Mike Stevens (Chair) encourage you to attend with more details on Head of Chief Scientist Office Page 10. Professor Julie Brittenden While it may be a period of change it is also a R&D Director, NHS Greater Glasgow & Clyde
period of growth. Recruitment to SHARE Professor Maggie Cruikshank continues at an impressive rate. Supported by Acting R&D Director , NHS Grampian Lorraine Kelly, TV celebrity and former rector of Dr Jacob George University of Dundee, SHARE smashed its 100k R&D Director, NHS Tayside milestone in early March and continues to grow with over 106,000 people now signed up Professor Dave Newby to support health research in Scotland. R&D Director, NHS Lothian
We also see growth in our programme of events, providing an opportunity to build and
NHS Research Scotland 1 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
Get in touch Research Bulletin
Send articles, photographs or feedback to: Remember our e: [email protected] monthly e-bulletin is issued the first t: 0141 951 5508 week of each month. Publication Dates Look out for it in your inbox! Issue Submission deadline If you don’t receive you can subscribe Summer (June/July) 3 June 2016 via www.nrs.org.uk Autumn (October) 5 October 2016 Insert your email Winter (January) 16 December 2016 address at the foot of the webpage beside ‘Newsletter’
Contributions from across the research
www.nrs.org.uk 2 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 SGP is a collaboration of Scottish Universities understanding of the molecular basis of and the NHS capitalising on £15 million diseases with knowledge about individual investment in whole genome sequencing patients’ genetic and other molecular technology by the Universities of Edinburgh characteristics – can support more tailored and Glasgow. treatment, improving the effectiveness and By combining knowledge of the whole genome safety of healthcare. sequence of patients and information from In January 2016, the First Minister announced their health records, genetic diseases can be £4 million investment for the establishment of understood better and new ways to test, a ‘Scottish Precision Medicine Ecosystem’ to manage and treat these diseases devised. co-ordinate precision medicine resources and With the funding, SGP will be using this opportunities across Scotland, bring together technology for genomic research on rare findings from individual research projects and diseases, cancers and Scottish populations, and improve information sharing to drive to work with Genomics England on the development. diagnosis of patients in Scotland with rare The ecosystem will be supported by the genetic diseases. Stratified Medicine Scotland Innovation Centre SGP will be a cornerstone of the Scottish Preci- that will align NHS, academic and business sion Medicine Ecosystem. assets, including NRS facilities, to drive developments in precision medicine. The funding will also support two flagship For more about these investments see: precision medicine programmes on pancreatic http://news.scotland.gov.uk/News/Investing-in- cancer and multiple sclerosis. the-healthcare-of-the-future-2255.aspx And in February 2016, the Minister for Sport, http://news.scotland.gov.uk/News/Investing-in- Health Improvement and Mental Health cutting-edge-medical-research-2338.aspx 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 3
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 7000+ rare genetic Conference on Rare Diseases and Orphan Products (ECRD) provides a disorders affecting... unique opportunity to connect with over 800 delegates from the rare disease community. Up to 300,000 people The ECRD is the only event which unites all rare disease stakeholders in Scotland... 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. 3.5million throughout Six content themes will be presented over two days; from the latest the UK... research to developments in new treatments, innovations in healthcare, social care and support. NHS Research Scotland will be in attendance. For more information 30million throughout visit www.rare-diseases.eu 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
www.nrs.org.uk 4
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 [email protected]
NHS Research Scotland 5 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 Imaging (titles are subject to change)
Partnership with Scottish Patients and Public
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.
www.nrs.org.uk 6 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 solu- tions 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 “We know that a research- Government also launched ‘Beating Cancer: active health service delivers Ambition and Action’. better outcomes and we are The £100 million strategy, to tackle cancer by improving prevention, detection, diagnosis, working to embed research treatment and after care, will serve as the in the ethos of our blueprint for cancer care in Scotland over the healthcare system” next five to ten years. With a specific chapter focussed on research, actions noted are: from the core site, allowing people with We will build on our research expertise and cancer across Scotland greater access to investments in precision medicine by funding studies being led from the central belt two research exemplars in ovarian and pan- creatic cancer, progressing genetic We will continue to invest in cancer research understanding of these diseases and infrastructure, and will work with Cancer supporting the adoption of genome-based Research UK to support the continuation of treatment into the NHS the Experimental Cancer Medicines Centres for a further 5 years. We will work with the UK regulatory authority to introduce greater flexibility in the clinical Read more at www.gov.scot trials activities that can be undertaken away
NHS Research Scotland 7 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 www.nrs.org.uk If you wish to get involved via attendance, provision of materials or simply want further information contact [email protected]
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
www.nrs.org.uk 8 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 Sponsors from a DA (or authorised dele- continue to be used for setting up studies in gates) are advised to contact the HRA at the the devolved administrations (DAs). earliest opportunity so that the HRA Ap- proval team can facilitate the review of the The above includes research studies that research study for English sites. are sponsored/led from England with research sites in a DA, where the DA will The above arrangements will be reflected in continue to use SSI forms. updates to operational guidance documents, Where research studies are sponsored/led including the HRA Approval Q&A.
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 that the information is correct
NHS Research Scotland 9 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: [email protected] 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 https://portal.ukcrn.org.uk/ Study Support Service helpdesk: [email protected] / 0113 343 4555
Clinical Research Specialty Group Lead roles Applications by 6 May 2016 The Chief Scientist Office (CSO) of the Scottish Applications, comprising a brief CV and cover let- Government is seeking applicants for three ter should be submitted to [email protected] Clinical Research Specialty Group Lead roles. by the closing date of 5pm on Friday 6th May 2016. Interviews will be held in St Andrew’s These part-time posts are open to medical House, Edinburgh in the latter part of June 2016. consultants working in Scotland with a research interest in one of the following areas: Please contact Dr Alan McNair on 0131 244 8494 if you would like to discuss further prior to appli- Clinical Genetics/Rare Diseases cation. Critical Care Dermatology Further information on each Specialty Group and job description available at www.nrs.org.uk Posts are for 0.1 FTE/1 PA, and will be for three years in the first instance.
www.nrs.org.uk 10 ...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 “It is important that breaking new treatments that have transformed global everyone gets an health. This is our chance to help develop the next generation of treatments for a healthier Scotland.” opportunity to help Find out how SHARE can support recruitment to your medical research…” research study or sign up at www.registerforshare.org You can also follow progress on twitter @register4share 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 www.registerforshare.org
NHS Research Scotland 11 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
www.nrs.org.uk 12 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 Feedback provided on a questionnaire for young people and National Research resulted in a 49% response rate (780 15 Ethics Guidelines year-olds responded!)
Very positive feedback Our input has helped from researchers on our make patient documents redrafting of patient more age appropriate information sheets and relevant
NHS Research Scotland 13 iCAN is a worldwide consortium of children's It provides a world-class learning opportunity advisory groups working together to provide a enabling young people and their families to voice for children and families in health, engage with paediatric professionals in medicine, research, and innovation through healthcare, research, industry, academic and synergy, communication and collaboration. regulation. 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. iCAN has partnered with Sant Joan de Déu Representatives of The Scottish Young Person’s Children's hospital in Barcelona, and along with Group (8 young members, 2 staff and 1 parent) the local KIDS Barcelona chapter, have built an have been sponsored by iCAN to travel to exciting and impactful agenda. Barcelona on 27 June to participate in the 2016 iCAN Research and Advocacy Summit. Follow the International Children's Advisory Net- work on Twitter, Instagram, and Google +, and The annual summit which draws around 150 search the event hashtag #iCANSummit2016 for youth, parent and team advisors will focus on live updates. nutrition, healthy lifestyle, and empowering young people to take part in medicine, research, and innovation.
“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 For more information contact: support to ensure clinical research material is age Pamela Dicks appropriate and contains the information young Children’s Network Manager people need and want to make informed 01224 438474 / [email protected] decisions about their participation in your trial. The service is FREE and available to all researchers.
www.nrs.org.uk 14
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.
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