The Longitudinal Linkage Collaboration: a platform for longitudinal COVID-19 research (Research Protocol V1.0)
Creators: name: University of Bristol
name: University of Edinburgh
Publisher: name: Zenodo
Year: 2020
Subjects: Protocol
Trusted Research Environment
TRE
UK Longitudinal Linkage Collaboration
UK LLC
longitudinal research
Longitudinal Population Study
COVID-19

description: UK Government and the Chief Scientific Advisor are establishing a funded programme of National Core Studies for COVID-19 research including the Longitudinal Health & Wellbeing National Core Study (LH&W NCS). LH&W NCS will establish a centralised, responsive research resource for the investigation into high priority COVID-19 (C-19) research questions. We will combine a diverse range of high value data assets including established longitudinal population studies (LPS), clinical studies and C-19 volunteer studies from across the UK, in addition to whole-population health and social records.

Our vision is to underpin the NCS programme by taking the unprecedented step of combining data assets from 15 major inter-disciplinary UK LPS and utilising these alongside the UK Biobank, the Zoe Symptom Tracker cohort and potentially other relevant sources. LPS sources of data include biological sample collections, genomic data and in-depth and selfreported measures of health and wellbeing collected before and after C-19. The UK Longitudinal Linkage Collaboration (UK LLC) will develop a centralised research resource where LPS in the UK LLC can be co-analysed. By combining the studies in this way including data from volunteers of all ages, social backgrounds and ethnicities and providing significant geographical coverage of the UK. Within the UK LLC the LPS data will be enhanced by linking self-reported data to volunteers’ routine health and administrative records (big data sources). This model allows the investigation of associations identified in whole population records through deep-dive analysis of rich LPS data. Through this the UK LLC will establish a longitudinal linkage platform to host these data assets within a secure environment and link in novel data collection (administered through contributing studies), geospatial exposure data and health and administrative records within a secure environment. These data assets will include detailed measures of C-19 related outcomes and pre-C-19 baseline datasets. The UK LLC will be a unique resource that aligns established data infrastructures with a diverse range of ground-breaking, UK research studies to inform C-19 research and policy.

The UK LLC will be updated from data assets that will continue to collect and record new data, including biosamples, providing insight into the rapidly changing health and social consequences of C-19. Furthermore, combining efforts in this way is much more cost-effective than developing new frameworks. We will undertake the data integration and management processes needed to align these varied data to support consistent, transparent and defendable research analysis. Aligned with this, national datasets will be used to assess coverage, bias and representation within the sum population of the contributing studies. We will do this through leveraging infrastructure and governance components established by the Health Data Research UK (HDRUK) programme and Administrative Data Research UK (ADRUK)/Office for National Statistics (ONS), Open Safely and the extensive coordination and involvement of the LPS community.