UK Longitudinal Linkage Collaboration (UK LLC): The National Trusted Research Environment for Longitudinal Research

Andy Boyd¹, Katharine M Evans¹, Emma L Turner¹, Robin Flaig^{2

3}, Jacqui Oakley¹, Kirsteen C Campbell³, Richard Thomas¹, Stela McLachlan^{2

3}, Matthew Crane¹, Rebecca Whitehorn^{2

3}, Rachel Calkin¹, Abigail Hill¹, Samantha Berman¹, David Ford⁴, Martin Tobin^{5

6}, David Porteous^{2

3}, Danielle F Gomes⁷, Maria-Paz Garcia⁸, Andrew Wong⁹, Aida Sanchez⁷, Chris Orton⁴, Simon Thompson⁴, John Gulliver¹⁰, Kathryn Adams¹¹, Ellena Badrick¹², Chiara Batini⁵, Michaela Benzeval¹³, Susie Boatman¹⁴, Gerome Breen^{15

16}, Shannon Bristow^{15

16}, Abigail Britten¹⁴, Luke Bryant⁵, Adam Butterworth¹⁷, Archie Campbell¹⁸, Sarah Chave¹⁹, John Danesh^{20

21

22

23

24

25}, Jayati Das-Munshi²⁶, Karen Dennison⁷, Emanuele Di Angelantonio^{20

21

22

23

24

27}, Thalia C Eley^{15

16}, Helen Fisher²⁶, Emla Fitzsimons²⁸, Alissa Goodman⁷, Michael Gregg¹⁹, Anna L Guyatt⁵, Anna Hansell¹¹, Rebecca Harmston¹⁹, Andy Heard²⁹, Morag Henderson⁷, Rosie Hill¹⁹, Szu-Chia Huang¹⁹, Catherine John^{5

6}, Frank Kee³⁰, Nathalie Kingston^{31

32}, Jack Kneeshaw¹³, Rashmi Kumar¹⁹, Genevieve Lachance⁸, Celestine Lockhart¹⁵, Hazel Lockhart-Jones⁴, Sarah Markham¹⁹, Dan Mason¹², Bernadette McGuinness³⁰, Maisie McKenzie¹⁹, Amy McMahon^{20

21

23}, Chelsea Mika Malouf^{15

16}, Mark Mumme³³, Charlotte Neville³⁰, Kate Northstone³³, Zoe Oldfield³⁴, Dara O'Neill³⁵, Manish Pareek³⁶, John Pickavance¹², Yasmin Rahman¹⁹, Holly Reilly³⁶, Angela Scott³⁰, Deb Smith¹⁹, Andrew Steptoe³⁷, Claire Steves⁸, Cathie Sudlow¹⁸, Gerald Sze⁵, Nicholas L Timpson³³, Tapiwa Tungamirai²⁴, Laura Venn⁵, Matthew Walker^{20

21

23}, Neil Walker³¹, Nicolas Wareham¹³, Aidan Watmuff¹², Tony Webb¹⁴, Karen Williams¹⁹, John Wright¹², Darioush Yarand⁸, George B Ploubidis⁷, John Macleod¹, Jonathan Ac Sterne¹, Nishi Chaturvedi⁹

Affiliations

¹ UK Longitudinal Linkage Collaboration, Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, BS8 2PS, UK.
² Centre for Genomic and Experimental Medicine, University of Edinburgh, Edinburgh, EH4 2XU, UK.
³ UK Longitudinal Linkage Collaboration, Usher Institute for Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, EH16 4UX, UK.
⁴ Population Data Science, Swansea University, Swansea, SA2 8PP, UK.
⁵ Population Health Sciences, University of Leicester, Leicester, LE1 7RH, UK.
⁶ University Hospitals of Leicester NHS Trust, Leicester, LE1 5WW, UK.
⁷ Centre for Longitudinal Studies, University College London, London, WC1H 0AL, UK.
⁸ Department of Twin Research & Genetic Epidemiology, King's College London, London, SE1 7EH, UK.
⁹ MRC Unit of Lifelong Health & Ageing, University College London, London, WC1E 7HB, UK.
¹⁰ Population Health Research Institute, City St George's, University of London, Cranmer Terrace, London, SW17 0RE, UK.
¹¹ Centre for Environment, Sustainability and Health, University of Leicester, Leicester, LE1 7RH, UK.
¹² Bradford Institute for Health Research, Bradford Teaching Hospitals NHS Foundation Trust, Bradford, BD9 6RJ, UK.
¹³ Understanding Society, University of Essex, Colchester, CO4 3SQ, UK.
¹⁴ MRC Epidemiology Unit, University of Cambridge, Cambridge, CB2 0QQ, UK.
¹⁵ Social Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, SE5 8AF, UK.
¹⁶ UK National Institute for Health and Social Care Research (NIHR) Biomedical Research Centre for Mental Health, South London and Maudsley Hospital, London, SE5 8AF, UK.
¹⁷ Division of Cardiovascular Medicine, University of Cambridge, Cambridge, CB2 0QQ, UK.
¹⁸ Generation Scotland, University of Edinburgh, Edinburgh, EH4 2XU, UK.
¹⁹ UK LLC Public Involvement Programme, UK Longitudinal Linkage Collaboration, Usher Institute for Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, EH16 4UX, UK.
²⁰ British Heart Foundation Cardiovascular Epidemiology Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, CB2 0BB, UK.
²¹ Victor Phillip Dahdaleh Heart and Lung Research Institute, University of Cambridge, Cambridge, CB2 0BB, UK.
²² British Heart Foundation Centre of Research Excellence, University of Cambridge, Cambridge, CB2 0BB, UK.
²³ National Institute for Health and Care Research Blood and Transplant Research Unit in Donor Health and Behaviour, University of Cambridge, Cambridge, CB2 0QQ, UK.
²⁴ Health Data Research UK Cambridge, Wellcome Genome Campus and University of Cambridge, Cambridge, CB10 1SA, UK.
²⁵ Department of Human Genetics, Wellcome Sanger Institute, Hinxton, CB10 1SA, UK.
²⁶ Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, SE5 8AF, UK.
²⁷ Health Data Science Research Centre, Human Technopole, Milan, 20157, Italy.
²⁸ Millennium Cohort Study, University College London, London, WC1H 0AL, UK.
²⁹ Department of Epidemiology and Biostatistics, School of Public Health, Imperial College London, Norfolk Place, London, SW7 2AZ, UK.
³⁰ Centre for Public Health, Queens University Belfast, Belfast, BT12 6BA, UK.
³¹ NIHR BioResource, Cambridge University Hospitals NHS Foundation Trust, Cambridge Biomedical Campus, Cambridge, CB2 0QQ, UK.
³² Department of Haematology, School of Clinical Medicine, University of Cambridge, Cambridge Biomedical Campus, Cambridge, CB2 0QQ, UK.
³³ Avon Longitudinal Study of Parents and Children, Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, BS8 2BN, UK.
³⁴ Institute for Fiscal Studies, University College London, London, WC1E 7AE, UK.
³⁵ Social Research Institute, University College London, London, WC1H 0AA, UK.
³⁶ Department of Respiratory Sciences, University of Leicester, Leicester, LE1 9HN, UK.
³⁷ Department of Behavioural Science and Health, University College London, London, WC1E 6BT, UK.

PMID: 40129687
PMCID: PMC11931487
DOI: 10.23889/ijpds.v10i1.2468

UK Longitudinal Linkage Collaboration (UK LLC): The National Trusted Research Environment for Longitudinal Research

Andy Boyd et al. Int J Popul Data Sci. 2025.

. 2025 Feb 17;10(1):2468.

doi: 10.23889/ijpds.v10i1.2468. eCollection 2025.

Authors

Affiliations

¹ UK Longitudinal Linkage Collaboration, Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, BS8 2PS, UK.
² Centre for Genomic and Experimental Medicine, University of Edinburgh, Edinburgh, EH4 2XU, UK.
³ UK Longitudinal Linkage Collaboration, Usher Institute for Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, EH16 4UX, UK.
⁴ Population Data Science, Swansea University, Swansea, SA2 8PP, UK.
⁵ Population Health Sciences, University of Leicester, Leicester, LE1 7RH, UK.
⁶ University Hospitals of Leicester NHS Trust, Leicester, LE1 5WW, UK.
⁷ Centre for Longitudinal Studies, University College London, London, WC1H 0AL, UK.
⁸ Department of Twin Research & Genetic Epidemiology, King's College London, London, SE1 7EH, UK.
⁹ MRC Unit of Lifelong Health & Ageing, University College London, London, WC1E 7HB, UK.
¹⁰ Population Health Research Institute, City St George's, University of London, Cranmer Terrace, London, SW17 0RE, UK.
¹¹ Centre for Environment, Sustainability and Health, University of Leicester, Leicester, LE1 7RH, UK.
¹² Bradford Institute for Health Research, Bradford Teaching Hospitals NHS Foundation Trust, Bradford, BD9 6RJ, UK.
¹³ Understanding Society, University of Essex, Colchester, CO4 3SQ, UK.
¹⁴ MRC Epidemiology Unit, University of Cambridge, Cambridge, CB2 0QQ, UK.
¹⁵ Social Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, SE5 8AF, UK.
¹⁶ UK National Institute for Health and Social Care Research (NIHR) Biomedical Research Centre for Mental Health, South London and Maudsley Hospital, London, SE5 8AF, UK.
¹⁷ Division of Cardiovascular Medicine, University of Cambridge, Cambridge, CB2 0QQ, UK.
¹⁸ Generation Scotland, University of Edinburgh, Edinburgh, EH4 2XU, UK.
¹⁹ UK LLC Public Involvement Programme, UK Longitudinal Linkage Collaboration, Usher Institute for Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, EH16 4UX, UK.
²⁰ British Heart Foundation Cardiovascular Epidemiology Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, CB2 0BB, UK.
²¹ Victor Phillip Dahdaleh Heart and Lung Research Institute, University of Cambridge, Cambridge, CB2 0BB, UK.
²² British Heart Foundation Centre of Research Excellence, University of Cambridge, Cambridge, CB2 0BB, UK.
²³ National Institute for Health and Care Research Blood and Transplant Research Unit in Donor Health and Behaviour, University of Cambridge, Cambridge, CB2 0QQ, UK.
²⁴ Health Data Research UK Cambridge, Wellcome Genome Campus and University of Cambridge, Cambridge, CB10 1SA, UK.
²⁵ Department of Human Genetics, Wellcome Sanger Institute, Hinxton, CB10 1SA, UK.
²⁶ Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, SE5 8AF, UK.
²⁷ Health Data Science Research Centre, Human Technopole, Milan, 20157, Italy.
²⁸ Millennium Cohort Study, University College London, London, WC1H 0AL, UK.
²⁹ Department of Epidemiology and Biostatistics, School of Public Health, Imperial College London, Norfolk Place, London, SW7 2AZ, UK.
³⁰ Centre for Public Health, Queens University Belfast, Belfast, BT12 6BA, UK.
³¹ NIHR BioResource, Cambridge University Hospitals NHS Foundation Trust, Cambridge Biomedical Campus, Cambridge, CB2 0QQ, UK.
³² Department of Haematology, School of Clinical Medicine, University of Cambridge, Cambridge Biomedical Campus, Cambridge, CB2 0QQ, UK.
³³ Avon Longitudinal Study of Parents and Children, Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, BS8 2BN, UK.
³⁴ Institute for Fiscal Studies, University College London, London, WC1E 7AE, UK.
³⁵ Social Research Institute, University College London, London, WC1H 0AA, UK.
³⁶ Department of Respiratory Sciences, University of Leicester, Leicester, LE1 9HN, UK.
³⁷ Department of Behavioural Science and Health, University College London, London, WC1E 6BT, UK.

PMID: 40129687
PMCID: PMC11931487
DOI: 10.23889/ijpds.v10i1.2468

Abstract

Introduction: The UK Longitudinal Linkage Collaboration (UK LLC) is the national Trusted Research Environment (TRE) for the UK's longitudinal research community, supporting the UK's unparalleled collection of Longitudinal Population Studies (LPS). Initially set up as a COVID-19 research resource, UK LLC is now a generic database for any research for the public good.

Objectives: UK LLC supports longitudinal research by providing record linkage and TRE services.

Methods: The UK LLC partnership provides a secure analytics environment, a trusted third-party linkage processor and a comprehensive governance framework to minimise risks to participant confidentiality. UK LLC is ISO 27001 certified and accredited by the UK Statistics Authority as a processor under the Digital Economy Act. The active involvement by members of UK LLC's public involvement programme ensures UK LLC is acceptable to LPS participants and the wider public. All UK LPS are eligible for inclusion. Researchers can apply to access the TRE via an approach that fulfils the needs of the LPS, the linked data owners and includes a review by public contributors.

Results: Twenty-two LPS have so far joined UK LLC. Where permissions allow, participants are linked to their National Health Service (NHS) England, NHS Wales and place-based records, with work ongoing to link to NHS Scotland and non-health administrative records, including Department for Work and Pensions and His Majesty's (HM) Revenue and Customs. UK LLC Explore allows potential researchers to discover the breadth of data available in the TRE. All applications are listed on UK LLC's publicly accessible Data Access Register.

Conclusions: UK LLC enables researchers to interrogate pooled LPS participant data that are systematically linked to diverse records. UK LLC remains open to additional LPS joining the partnership and will increase the breadth of data to support the longitudinal research community and attract increasing numbers of researchers across multiple disciplines, government departments and industry.

Keywords: FAIR; UK LLC; cohort studies; longitudinal population studies; record linkage; trusted research environment.

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Conflict of interest statement

Conflicts of interest: J Danesh serves on scientific advisory boards for AstraZeneca, Novartis and UK Biobank, and has received multiple grants from academic, charitable and industry sources outside the submitted work. M Tobin, A Guyatt and C John have a funded research collaboration with Orion for collaborative research projects outside the submitted work. No other conflicts of interest were disclosed.

Figures

**Figure 1: The wider UK LLC TRE partnership**

**Figure 2: UK LLC architecture for ‘split file’ management of participant identifiers and de-identified LPS and linked records**

See this image and copyright information in PMC

References

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1. University of Bristol & University of Edinburgh. The Longitudinal Linkage Collaboration: a platform for longitudinal COVID-19 research (Research Protocol V1.0). Zenodo; 2020. 10.5281/zenodo.10868639 - DOI
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1. UK Health Data Research Alliance and NHSX. Building Trusted Research Environments - Principles and Best Practices; towards TRE ecosystems. 2021. 10.5281/zenodo.5767586 - DOI

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UK Longitudinal Linkage Collaboration (UK LLC): The National Trusted Research Environment for Longitudinal Research

Affiliations

UK Longitudinal Linkage Collaboration (UK LLC): The National Trusted Research Environment for Longitudinal Research

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

MeSH terms

LinkOut - more resources

Full Text Sources