17th October 2024 – by TwinsUK

TwinsUK is excited to announce an expansion of our data contribution to the UK Longitudinal Linkage Collaboration (UK LLC). During the COVID-19 pandemic, TwinsUK joined forces with other population cohort studies to share data for vital COVID-19 research. Now, the UK LLC is growing beyond COVID-19 to enable broader research that links health, environmental, education, and administrative records, based on each study’s permissions. 

TwinsUK has already contributed COVID-19 datasets and linked our members’ health and environmental records. Following consultation with our TwinsUK Volunteer Advisory Panel, we will now be contributing additional datasets and linking to participants’ education records in line with the preferences twins have set on their consent forms or earlier data linkage decision forms.

All data is securely held at the University of Swansea and managed by the University of Bristol, ensuring that it remains de-identified at all stages to protect privacy. Researchers who wish to use this data must apply, and only bona fide researchers working on health studies for public benefit will be granted access to TwinsUK data, after approval by the TwinsUK Resource Executive Committee. 

We understand how important it is to have control over your data, and you can always update your preferences regarding what records are shared and linked. Further information on data linkage preferences is available here. 

Head of IT and Data, Darioush Yarand explained: 

“We’re pleased to be working closely with the UK LLC, enabling even more vital research into public health. This expansion allows us to work on critical questions beyond COVID-19, and fulfil the ongoing TwinsUK remit, helping our researchers to better understand how various factors influence people’s health throughout life.” 

For more details on this collaboration and how your data is protected, please visit the UK LLC website. 

Please see the fair processing information here.