IJPDS International Journal of Population Data Science

The UK Longitudinal Linkage Collaboration (UK LLC) is the national Trusted Research Environment (TRE) for data linkage in longitudinal population research. We support many of the UK’s “consented cohorts” and our infrastructure forms part of the UK’s wonderful tradition of following participants health and wellbeing over lifetimes and generations. Our interdisciplinary partnership has developed a centralised record linkage and analysis platform for the community. This forms an unparalleled data capability, opens new scientific opportunities for the research community and forms a platform for ‘reusable research’ approaches that bring efficiency benefits across our user base.

Establishing a TRE for this purpose is now necessary to meet changing public expectations for good practice in data security and risk management. The TRE model enables our community to continue to meet its commitments to data confidentiality, and the transparency of data use and users necessary to build trust in the research process.

Uniquely, the UK LLC has secured permissions to link longitudinal population research study collected data to participants’ NHS health records, socio-economic records and environmental and place-based data from across the UK’s four nations. This protocol paper, published in the International Journal of Population Data Science (IJPDS), sets out the manual for how the UK LLC works. We feel it is important to do this so our methods are transparent to research users, to other longitudinal studies and to participants of our partner studies.

Developing this protocol has been a team effort. The UK LLC is a partnership involves over 20 longitudinal studies and their expert staff, SeRP infrastructure specialists, environmental exposure modellers, and the central team of data curators, governance and public involvement experts. Data curators and governance teams from many government departments have been essential to our development and their contribution has enabled new combinations of data to be linked. This protocol represents investment from a very wide range of experts and epitomises the “Team Data Science” approach championed by the International Population Data Linkage Network (IPDLN) in its conferences and through IJPDS.

The UK LLC is now entering a new phase, where permissions are in place to extend our purpose to support any research in the public good. We are being guided in this by the data managers and wider teams at our partner longitudinal studies and by participants and public contributors who are embedded across critical functions of the TRE. Each study has or will (prior to any wider use starting) contact their participants about this and ensure participants are informed and understand their rights.

UK LLC is now encouraging applications from both longitudinal researchers and analysts who use large datasets as part of their research and are interested in the depth of detail present in linked Longitudinal Population Study (LPS) datasets.

With over 325,000 participant records in the TRE, datasets can be viewed via UK LLC Explore, and UK LLC Guidebook providing a comprehensive user guide and growing set of data documentation. Applications are made via the UK LLC Application System and the UK LLC is currently free to access for early adopters.

We are delighted to publish this protocol in the International Journal of Population Data Science given the contribution of the community to developing the concepts that informed its design and development.

 

Click here to view the full article

Andy Boyd (Director, UK LLC), Robin Flaig (Co-Director, UK LLC) and Jacqui Oakley (Head of Operations, UK LLC) on behalf of the UK LLC partnership

Boyd, A., Flaig, R., Evans, K., Turner, E., Oakley, J., Campbell, K., Thomas, R., McLachlan, S., Crane, M. et al. (2025) “UK Longitudinal Linkage Collaboration (UK LLC): The National Trusted Research Environment for Longitudinal Research”, International Journal of Population Data Science, 10(1). doi: 10.23889/ijpds.v10i1.2468.

 

UK LLC Partner Longitudinal Population Studies: Airwave Health Monitoring Study, Avon Longitudinal Study of Parents and Children (ALSPAC), 1970 British Cohort Study (BCS70), Born in Bradford (BIB), English Longitudinal Study of Ageing (ELSA), The European Prospective Investigation into Cancer (EPIC) Norfolk Study, Extended Cohort for E-health, Environment and DNA (EXCEED), The Fenland Study, Generation Scotland, Genetic Links to Anxiety and Depression Study (GLAD; part of the NIHR BioResource), The Millennium Cohort Study (MCS), 1958 National Child Development Study (NCDS), Next Steps, Northern Ireland Cohort for the Longitudinal Study of Ageing (NICOLA) (non-linked data only), MRC National Survey of Health and Development Cohort/1946 Birth Cohort (NSHD/1946BC), National Institute of Health and Care Research (NIHR) BioResource COVID-19 Psychiatry and Neurological Genetics (COPING) Study, Southall and Brent Revisited (SABRE) (non-linked data only), TRACK-COVID Study, TwinsUK, Twins Early Development Study (TEDS), Understanding Society - the UK Household Longitudinal Study (UKHLS).