The UK Longitudinal Linkage Collaboration (UK LLC) is a national Trusted Research Environment (TRE) for longitudinal research. It is a collaborative endeavour – led by the Longitudinal Health & Wellbeing National Core Study – including more than 20 UK longitudinal studies from 10 institutions, SeRP UK at Swansea University and NHS Digital Health Care Wales (TRE infrastructure and data pipeline development) and the University of Leicester (environmental exposure modelling).
It has been set up to bring together information from longitudinal study volunteers with their routine records. This happens in a secure way to help researchers work to improve health and wellbeing throughout and beyond the COVID-19 pandemic.
The UK LLC hosts more than 20 studies with approximately 250,000 study participants. These studies bring exceptionally detailed and broad varieties of study data collected over many years and pandemic follow-up data.
The UK LLC has systematically linked these study data to NHS and environmental exposure records and is currently negotiating access to administrative records creating a truly interdisciplinary, cross-cutting capability for longitudinal research.
Andy Boyd, UK LLC Director said, “The UK Longitudinal Linkage Collaboration is proud to become a member of the Health Data Research Alliance. As a national Trusted Research Environment for longitudinal research we’re excited about the prospect of building on our National Core Studies collaboration to build infrastructure to support pandemic research. Our membership also aligns with that of many of our collaborating Longitudinal Population Studies and of our SeRP infrastructure partners at Swansea University and NHS Digital Health Care Wales. We look forward to contributing to the growth of the UK TRE ecosystem.”
The studies collaborating in the UK LLC are:
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), The Millennium Cohort Study (MCS), 1958 National Child Development Study (NCDS), Next Steps, Northern Ireland Cohort for the Longitudinal Study of Ageing (NICOLA), MRC National Survey of Health and Development Cohort/1946 Birth Cohort (NSHD/1946BC), National Institute for 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, Understanding Society – the UK Household Longitudinal Study (UKHLS).
The UK LLC is designed as a four-nation interdisciplinary data resource: pooling data from many Longitudinal Population Studies (LPS) and systematically linking to participants health (NHS), administrative (employment, benefits, education) and environmental (physical and built environment) data.
To date, the UK LLC has collated rich pre-pandemic and pandemic phenotype and ‘omic data from more than 20 UK longitudinal population studies and >250,000 participants, collected over many decades, and linked with NHS health records. The study data is varied and includes 350+ study-collected data tables.
The NHS Digital data currently available is COVID-19 relevant, including but not limited to Primary Care GPES Data for Pandemic Planning and Research, Hospital Episodes Statistics, Mental Health Services, Testing and Vaccination data. A full list of datasets is available here: Datasets | UK Longitudinal Linkage Collaboration (ukllc.ac.uk).
Work is underway with our collaborators at the University of Leicester to include environmental exposure data. Pandemic and pre-pandemic exposure estimates have been modelled for air pollution levels, information on access to green spaces e.g. parks, and noise pollution. The UK LLC is in negotiations with National Core Studies partners to link to administrative records.
The UK LLC is run by the Universities of Bristol and Edinburgh, in collaboration with UCL, SeRP UK, University of Leicester and Swansea University. It is part of the COVID-19 Longitudinal Health and Wellbeing National Core Study, which is run by UCL and the University of Bristol. This work is funded by UKRI.
The UK LLC uses data provided by study participants and patients collected through longitudinal studies, or as part of their care and support.