Born in Scotland in the 2020s - Pilot study

Lead Research Organisation: University of Edinburgh
Department Name: Centre for Cardiovascular Science

Abstract

Pregnancy offers a unique opportunity to positively impact on short- and long-term health outcomes of both the mother and baby and thus to influence the health of the next generation. In this study, we aim to conduct a pilot study to demonstrate the feasibility of establishing a large population study of 100,000 pregnant women and their children, recruited from across the whole of Scotland. The pilot study will pave the way for a new "Born in Scotland in the 2020s" cohort which will gather and safely store routinely collected clinical, health and social data from hospitals, schools and others sources. This confidential data will then be then anonymised so that individual participants cannot be identified before data analysis. We will also store blood and urine samples which are left over and normally thrown away after they have been used for diagnostic purposes. We will link these samples to the other data to establish a unique bioresource which can be used to identify new biomarkers for adverse pregnancy outcomes. Our study will allow us to understand the links between early life experiences and later ill health and to identify novel targets for intervention to improve outcomes for pregnant women and their children. The rich and extensive data collected will be a valuable and sustainable resource for researchers in the field.

Technical Summary

We aim to conduct a pilot study to demonstrate the feasibility of establishing the proposed "Born in Scotland in the 2020s" population cohort of 100,000 pregnant women and their children in Scotland, including extensive data linkage from mothers, fathers and children linked to a bioresource. We plan an efficient study design by capitalising on routine data and biological sample collection. The cohort will be a sustainable resource to address fundamental and contemporaneous questions in our understanding of the drivers of long-term maternal and child health, including pregnancy and its complications.

ROUTINE CLINICAL AND HEALTH SERVICE will be used to record details of:
a) socio-demographic, medical and obstetric history
b) details of the current pregnancy including laboratory results, fetal ultrasound scans, pregnancy complications
c) birth outcomes
d) healthcare usage

BIOSAMPLES will be stored and banked for future use, utilising the well-established Scottish National Health Services Research Scotland (NRS) Biorepositories which enable storage of surplus samples which would otherwise be discarded after clinical use.

LONG-TERM FOLLOW UP will be through prospective and retrospective record linkage of mothers, fathers and children using the Scottish Community Health Index (CHI) unique personal identifier to relevant health and healthcare databases, for example primary and secondary care and educational attainment.

We bring together a multidisciplinary team with expertise in epidemiology, birth cohorts, life-course health, obstetric medicine, neonatology, biobanking, data science, clinical trials, public health and patient, public involvement. Together our research addresses the mechanisms, causes, consequences, optimal management of pregnancy, its complications and the long term health for mothers and their children giving us the skills and knowledge to develop a flexible, dynamic and sustainable resource, "Born in Scotland in the 2020s".
 
Title Born in Scotland Participant and Community Midwife Information Videos 
Description Our Born in Scotland research team created short information videos tailored to the audience and the study sites - to promote on our website and social media for participants and sent directly to clinical colleagues at our research study sites. These were created on software Biteable. 
Type Of Art Film/Video/Animation 
Year Produced 2022 
Impact The videos are displayed on our website and have been viewed by people interested in finding out more about the study and before joining up. The videos created with the community midwives in mind have been a useful tool for informing clinical colleagues about the study and anything they might need to know to support the study and the potential participants. 
URL https://www.ed.ac.uk/cardiovascular-science/born-in-scotland/join
 
Title Collaborative visual minutes artwork for Our Planet, Our Health, Our Future event 
Description During the Edinburgh Science Festival event " Our Planet, Our Health, Our Future" on 14 April 2023, Jenny Capon (a local illustrator and graphic recorder) created a live art visual minutes display. 
Type Of Art Artwork 
Year Produced 2023 
Impact The artwork created discussion on the night and we've been able to display the printed artwork at events, promoting Born in Scotland and our wider EPRT research and prompting discussions and reflections. 
URL https://www.jennycapondraws.com/gallery-4
 
Title Data Trusts Animation Video and Infographic 
Description As part of the Born in Scotland Data Trust project, we commissioned a creative agency with experience working with the Health and University sectors 'Niftyfox Creative' (NFC), to create a 3 minute animation video and infographic explaining data trusts in the health research context in an accessible way. 
Type Of Art Film/Video/Animation 
Year Produced 2023 
Impact We are using this to support the next phase of the project, which has been awarded Jan-Dec 2024. The video and infographic can be used as a tool to inform participants, public and professional about a data trust in the context of our Born in Scotland cohort. The video and infographic are on the institutional websites and can be shared on social media and at events/conferences. https://warwick.ac.uk/fac/soc/law/research/projects/scotland-data-trust/research-outputs 
URL https://edinburgh-pregnancy-research.ed.ac.uk/current-studies/born-in-scotland-data-trust
 
Description Data Empowerment Fund - Born in Scotland Data Trust
Amount $75,000 (USD)
Organisation Open Collective Foundation 
Sector Charity/Non Profit
Country United States
Start 01/2024 
End 12/2024
 
Description I-test 2: Novel retinal biomarkers in pregnancy for early prediction of stillbirth
Amount £660,072 (GBP)
Organisation Wellcome LEAP 
Sector Charity/Non Profit
Country United States
Start 08/2023 
End 08/2024
 
Description MIREDA (Mother and Infant Research Electronic Data Analysis) Partnership
Amount £1,472,324 (GBP)
Funding ID MR/X02055X/1 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 04/2023 
End 04/2026
 
Description Smart Intensive Monitoring in PREGnancy (SIMPREG)
Amount $773,033 (USD)
Organisation Wellcome LEAP 
Sector Charity/Non Profit
Country United States
Start 06/2023 
End 06/2024
 
Description Using digital phenotyping to explore the association between environment and pregnancy health: a novel Scottish Digital Birth Cohort (Dr Rosemary Townsend)
Amount £380,941 (GBP)
Funding ID EPD/22/17 
Organisation Chief Scientist Office 
Sector Public
Country United Kingdom
Start 09/2023 
End 10/2025
 
Title Born in Scotland Birth Cohort Dataset 
Description The Born in Scotland study creates a dataset of pregnancy data, including medical histories, ultrasound scans and accompanying biosamples at ~ 12/28 weeks gestation. These biosamples are stored within the Edinburgh Reproductive Tissue Biobank and can be requested by others. The dataset is still being added to and partial demographic data can be requested with a view to the anonymised dataset being available after data linkage. 
Type Of Material Database/Collection of data 
Year Produced 2022 
Provided To Others? Yes  
Impact We have been able to report interim demographic findings to our Co-Investigators at the annual meetings and in presentations and posters at events for the general public and practitioners. 
 
Description Collaboration with Elixir Birth cohort 
Organisation King's College London
Country United Kingdom 
Sector Academic/University 
PI Contribution As CI of Born in Scotland I have been invited to attend the Elixir working group meetings. This has been a good opportunity to share knowledge about the set up of the cohort and to understand the lessons learned by the Elixir group. There is also an opportunity to discuss options for joint projects.
Collaborator Contribution As above, this is a forum for discussion about shared problems e.g. how to access data, and to discuss common areas for collaboration on joint projects.
Impact Joint application to Medical Research Council for a grant (led by Sinaed Brophy in Cardiff)
Start Year 2021
 
Description Collaboration with GenV Birth Cohort 
Organisation Murdoch Children's Research Institute
Country Australia 
Sector Academic/University 
PI Contribution Through discussions with Generation V sharing knowledge about the set up and running and expansion of a birth cohort, a collaboration was formed with GenV and University of Warwick which has resulted in a joint award for the Data Trust project.
Collaborator Contribution A forum for discussion about sharing good practice, shared problems e.g. how to access data, and to discuss common areas for collaboration on joint projects.
Impact Gen V attended the Developing a Data Trust for the Born in Scotland symposium in May 2023. From that, a successful joint application for Developing a Data Trust for the Born in Scotland Project funded by the Data Empowerment Fund, 2024.
Start Year 2021
 
Description Collaboration with University of Warwick and the Association for Young People's Health 
Organisation Association for Young People's Health (AYPH)
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution This collaboration resulted in two awards for the project Developing a Data Trust for Born in Scotland. Our team provided access to participants from the Born in Scotland cohort who had agreed to be contacted by research team with information on additional studies. The participants from this cohort formed the focus groups and we contributed staff with expertise in PPI and qualitative research. We presented this work at the Edinburgh Science Festival event in 2023 and from that we were able to discuss concepts around birth cohorts and data trusts with the attendees.
Collaborator Contribution The University of Warwick provided expertise in Law and Data Trust. AYPH contributed expertise with young people ran a number of focus groups with diverse groups of young people.
Impact Annual symposium in Warwick attended by University of Warwick, University of Edinburgh, AYPH, members of other Data Trust pilot projects, GenV and other interested professionals (31 May 2023). Satellite meeting with our advisory board members (30 May 2023). Established institutional webpages at the University of Warwick and the University of Edinburgh. Commissioned a creative agency with experience working with the Health and University sectors 'Niftyfox', to create a 3 minute animation video and infographic explaining data trusts in the health research context in an accessible way. In discussion with a University based research project and an industry leading healthcare app provider about the possibilities for a data trust dashboard. In contact with Carol Porteous, WT, about PPI training for future trustees.
Start Year 2022
 
Description Collaboration with University of Warwick and the Association for Young People's Health 
Organisation University of Warwick
Country United Kingdom 
Sector Academic/University 
PI Contribution This collaboration resulted in two awards for the project Developing a Data Trust for Born in Scotland. Our team provided access to participants from the Born in Scotland cohort who had agreed to be contacted by research team with information on additional studies. The participants from this cohort formed the focus groups and we contributed staff with expertise in PPI and qualitative research. We presented this work at the Edinburgh Science Festival event in 2023 and from that we were able to discuss concepts around birth cohorts and data trusts with the attendees.
Collaborator Contribution The University of Warwick provided expertise in Law and Data Trust. AYPH contributed expertise with young people ran a number of focus groups with diverse groups of young people.
Impact Annual symposium in Warwick attended by University of Warwick, University of Edinburgh, AYPH, members of other Data Trust pilot projects, GenV and other interested professionals (31 May 2023). Satellite meeting with our advisory board members (30 May 2023). Established institutional webpages at the University of Warwick and the University of Edinburgh. Commissioned a creative agency with experience working with the Health and University sectors 'Niftyfox', to create a 3 minute animation video and infographic explaining data trusts in the health research context in an accessible way. In discussion with a University based research project and an industry leading healthcare app provider about the possibilities for a data trust dashboard. In contact with Carol Porteous, WT, about PPI training for future trustees.
Start Year 2022
 
Description Collaboration with the Early Life Feasibility Cohort Study 
Organisation University College London
Department Centre for Longitudinal Studies
Country United Kingdom 
Sector Academic/University 
PI Contribution Prof Reynolds is a member of the Scientific Leadership and Delivery Team. The Born in Scotland cohort is contributing data.
Collaborator Contribution The Early Life Cohort Feasibility Study aims to paint a nationally representative picture of the circumstances and lives of a new cohort of babies born at a critical time in the UK's history. The Early Life Cohort Feasibility Study draws a nationally representative sample of babies born in a two-month period from all four UK nations. It aims to recruit over 1,500 families, with at least 1,000 in England and Wales, and 300 each in Scotland and Northern Ireland.
Impact The main aim of the project is to test the feasibility of sampling and recruitment for an innovative new UK-wide birth cohort study. However, the data from the feasibility study itself will also be made available to the research and policy community. The data will be available from the UK Data Service in 2025. Extensive public engagement work has been carried out to inform the scientific content and design of the Early Life Cohort Feasibility Study.
Start Year 2021
 
Description BBC Radio Scotland 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact BBC Radio Scotland interview on Good Morning Scotland on 14 Dec 2023 in which Dr Rosemary Townsend discussed pregnancy and birth in Scotland and the Born in Scotland project.
Year(s) Of Engagement Activity 2023
 
Description BBC TV news segment about rates of C Section in Scotland 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact 25 November 2022. One of the study team members was interviewed by a journalist about the high rates of Caesarean Section in Scotland compared to England. She mentioned Born in Scotland as a study that would be able to address why when it roles out at larger scale.
Year(s) Of Engagement Activity 2022
URL https://www.bbc.co.uk/news/uk-scotland-62926167
 
Description Born in Scotland Data Trust Symposium (2023) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A multi-disciplinary symposium to consider the lessons learned and future directions of the three data trust pilots - the BIS Data Trust, the General Practice data trust, and the Brixham data trust. Hosted by the University of Warwick, the symposium brought together academics, health researchers, information governance experts, policy makers, legal practitioners, and fellow data trust pioneer projects (31 May 2023). The wide range of expertise and perspectives in the room enabled discussion of the key opportunities and challenges for the operation of data trusts in health research today.
Year(s) Of Engagement Activity 2023
URL https://warwick.ac.uk/fac/soc/law/research/projects/scotland-data-trust
 
Description Born in Scotland Study website 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact We have created a study website. This allows potential participants to 'opt in' to the study but also gives general information about the study and a newsletter
Year(s) Of Engagement Activity 2022,2023
URL https://www.ed.ac.uk/cardiovascular-science/born-in-scotland
 
Description Born in Scotland newsletter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact We have produced a Born in Scotland newsletter. This is being disseminated via our website and social media channels (twitter, facebook, instagram) in order to have the widest reach.
Year(s) Of Engagement Activity 2023
URL https://www.ed.ac.uk/cardiovascular-science/born-in-scotland
 
Description Born in Scotland twitter handle 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact We have started a twitter feed @born_scotland to promote the study and give information about the study and relevant pregnancy facts
Year(s) Of Engagement Activity 2022,2023
 
Description Centre for Cardiovascular Science Symposium 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Presented a poster for the Born in Scotland study at the annual Centre for Cardiovascular Science Symposium day on 15th June 2023.
Year(s) Of Engagement Activity 2023
 
Description Daphne Jackson Research Fellow Sandpit 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Daphne Jackson Research fellows are a multidisciplinary network by default, with fellows from across the research disciplines. 3 fellows from Edinburgh organised a Research Sandpit, a 1-day workshop, to explore how they can use their inherent multidisciplinary expertise to benefit others. This event addressed the theme of "Human health".

I spoke at this meeting, addressing the question: "What do we need to do to further human health in Scotland?". I particularly spoke about Born in Scotland as a new virtual cohort.

This led to discussion and workshop activities and there will be a follow-up event
Year(s) Of Engagement Activity 2022
 
Description Edinburgh Pregnancy Research Team twitter feed 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact We run an active twitter feed @EdiPregResearch to promote the pregnancy related research of the team and to disseminate news about our studies widely
Year(s) Of Engagement Activity 2022,2023
 
Description Edinburgh Pregnancy Research Team website 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact We have created the Edinburgh Pregnancy Research Team website to showcase our research activities and allow an easy to navigate look at our study team members, current and previous research studies.
Year(s) Of Engagement Activity 2022,2023
URL https://www.ed.ac.uk/edinburgh-pregnancy-research
 
Description Edinburgh Science Festival - 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact An adult event at Dynamic Earth on 14th April 2023 "Our planet, our health and our future " - Edinburgh scientists and healthcare workers at an interactive evening exploring the interaction of environment and climate with our health from the womb throughout the life course. We explored how the public as citizen scientists can engage with research that can help us to understand, adapt to and shape our environment for a healthy community and planet. Dr RT presented on "Our environment and pregnancy health, the foundation of the health of the community" which incorporated the Born in Scotland study. After talks and a Q&A session, there was a 'fair' of stalls highlighting research and innovative projects that address planetary health and the climate crisis, including exhibitor "Born in Scotland in the 2020s - innovative digital birth cohort to understand maternal and child health after pregnancy experiences".
Year(s) Of Engagement Activity 2023
URL https://www.whatsoninedinburgh.co.uk/event/117146-edinburgh-science-festival:-our-planet,-our-health...
 
Description Invited Speaker - RCOG Scottish Staff Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Member of team - invited speaker at the RCOG Scottish Staff Conference, Dunblane 19th January 2024 "Stillbirth risk prediction" with mention of the Born in Scotland project can support this research.
Year(s) Of Engagement Activity 2024
 
Description Lothian Health and Care Professions Research Conference 2023 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact NHS Lothian hosted the second Lothian Health and Care Professions Research Conference (8th November 2023) for Nurses, Midwives, Allied Health Professions, Pharmacists, Psychologists and Healthcare Scientists (NMAHPPS) in conjunction with its academic partners at Queen Margaret University, University of Edinburgh, Edinburgh Napier University, University of Stirling, Robert Gordon University and University of Strathclyde. Born in Scotland presented a poster and had the opportunity to speak about BiS and other EPRT research to conference attendees, with some keen for us to speak with their midwifery students.
Year(s) Of Engagement Activity 2023
URL https://services.nhslothian.scot/hcprofessionsresearch/lothian-health-and-care-professions-research-...
 
Description Presentation at MEG-UK meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact I was asked to present about Born in Scotland at the MEG-UK 2022 meeting. This was useful as there were representatives from other cohort studies there including Generation Scotland and Our Future Health.
Year(s) Of Engagement Activity 2022
URL https://www.meg-uk.org/
 
Description Public Panel discussion - Working with Wombs: the uterus in pregnancy, birth, and beyond 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact 22 May 2023 in Till's bookshop, Edinburgh. Public panel discussion 'Working with Wombs: the uterus in pregnancy, birth, and beyond' including one of the members of our team who discussed Born in Scotland.
Year(s) Of Engagement Activity 2023
URL https://x.com/tillsbooks/status/1658474532594933761?s=20
 
Description Red4Research 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A stall was set up on 14th June 2023 as part of Red4Research 2023, to raise awareness of the research going on in and around the Royal Infirmary of Edinburgh hospital, the University and Edinburgh and within Lothian for the Edinburgh Pregnancy Research Team. Red4Research brings together those participating, supporting and undertaking research. Around 40-50 people directly spoke with us with more viewing the materials on the stand. It was Free to attend and the visitors included members of public and hospital staff/students.
Year(s) Of Engagement Activity 2023
URL https://rdforum.nhs.uk/red4research-2023/
 
Description STOPPIT-3 Second Investigators' Meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact 20 delegates attended from research sites throughout the UK. The purpose of the meeting was to explain recent changes in our approach to recruitment, including changes to the protocol involving women with GDM and to enthuse our larger sites. A presentation about STOPPIT-M was well-received and seemed to enhance understanding of why the study is being carried out. It is hoped our recruitment rate for STOPPIT-M will increase.
Year(s) Of Engagement Activity 2024
URL http://www.stoppitstudy.co.uk
 
Description Scottish Research Showcase 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact The Edinburgh Pregnancy Research Team were given two slots during the online Scottish Research Showcase event to post content including videos of our work and profiles of the team. This was free and open to all @GlobalSciShow.
Year(s) Of Engagement Activity 2022
 
Description Social Media Takeover on the International Day of the Midwife 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Social media takeover of the University of Edinburgh College of Medicine and Veterinary Medicine, Medical school social media channels on the International Day of the Midwife (5th May 2023). We posted images, text and videos explaining our work and the midwife role within the Edinburgh Pregnancy Research Team. This was free to attend and open to all.
Year(s) Of Engagement Activity 2023
URL https://x.com/EdinUniMedicine/status/1654411088023154688?s=20
 
Description Webinar - Women's Health Sustainability Network Event 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Webinar on 17 January 2024 "Women's Health Sustainability Network Event: Air Pollution and Pregnancy"; speakers on the topics of Air pollution and pregnancy with one of the members of our team presenting on "Air pollution and Maternal Health" and the Born in Scotland project.
Year(s) Of Engagement Activity 2024
URL https://networks.sustainablehealthcare.org.uk/events/womens-health-sustainability-network-event-air-...
 
Description William Longworth Lecture, Lothian Annual Women's Health Day 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Increased awareness of the study resulting in increased recruitment and dissemination through social media
Year(s) Of Engagement Activity 2022
URL https://www.ed.ac.uk/centre-reproductive-health
 
Description William Longworth Lecture, Lothian Annual Women's Health Day 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation by Dr RT: 'Small Baby Research Clinic and the contribution of research clinics in Lothian' 15th December 2023. Patients who attend the small baby clinic are provided with information on and invited to join Born in Scotland. Increased awareness of the study resulting in increased recruitment and dissemination through social media.
Year(s) Of Engagement Activity 2023