Through established best practice in the use of health data and in partnership with other members, UK LLC’s priority is to build on the National Core Studies collaboration to further develop infrastructure and support pandemic research.
Operated by the University of Bristol and the University of Edinburgh, UK LLC’s COVID-19 Longitudinal Health and Wellbeing National Core Study brings together data from participants and patients collected through longitudinal studies or via routine records.
The data-gathering is carried out securely to help researchers answer pressing COVID-19 questions and to improve health and wellbeing throughout and beyond the pandemic.
Andy Boyd, UK LLC Director, says, “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 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.
Paola Quattroni, Head of Alliance Strategy and Engagement (Interim), HDR UK, says:
“The UK Longitudinal Linkage Collaboration has been instrumental in informing both the short and long-term responses to COVID-19 through data-driven research. It is also contributing to accelerate improvements to the wider UK health data research infrastructure. We warmly welcome UK LLC to the UK Health Data Research Alliance and look forward to working together to share best practice and learning from each other.”
The COVID-19 Longitudinal Health and Wellbeing National Core Study is one of Six National Core Studies set up for COVID-19 research, funded by the UK Government.
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 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).
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