TwinsUK is one of many population cohort studies in the UK. During the COVID-19 pandemic, TwinsUK united with other cohorts in the UK to pool together our data in order to advance COVID-19 research, through the UK Longitudinal Linkage Collaboration. The data is held securely at the University of Swansea and managed by the University of Bristol.
Now, the UK LLC is expanding to allow researchers to study research questions beyond COVID-19. The UK LLC will hold research data that cohorts choose to share on their participants and link to health, environmental, education and administrative records depending on each study’s permissions.
More information about the UK LLC is available on their website: https://ukllc.ac.uk/
What this means for TwinsUK members
TwinsUK previously shared COVID-19 datasets with the UK LLC and allowed linkage to TwinsUK members’ health and environmental records unless twins had opted out of this.
Following a consultation with our TwinsUK Volunteer Advisory Panel, we will now contribute some more of our datasets with the UK LLC, and allow the UK LLC to link to participants’ education records as well as health and environmental records, according to your preferences as indicated on your TwinsUK consent form or earlier data linkage decision form.
Accessing data in the UK LLC
All participants’ data held in the UK LLC will be de-identified at all stages, meaning that researchers and the UK LLC staff cannot identify anyone from the data.
Researchers can apply to use any of the data held in the UK LLC. TwinsUK will retain complete control over who accesses TwinsUK data. The TwinsUK Resource Executive Committee will review every request to use TwinsUK data and only allow access to bona fide researchers carrying out health research for the public good.
Your preferences
Further information about how we link to your health, education and environmental records is available here. You may check and update your linkage preferences by contacting our team using the details below.
Due to logistical constraints, your linkage preferences will apply to both TwinsUK’s ability to link to your records as well as the UK LLC. For example, if you agree to health and education records linkage, both TwinsUK and the UK LLC will be able to link to your health and education records. If you set your preferences to not allow linkage to your environmental records, neither TwinsUK nor the UK LLC will be able to link to your environmental records.
National opt-out
If you have opted out of allowing your health data to be used for research or planning through your GP surgery or online, then even if you decide to agree to health linkage, we will not be able to do so. You can find out more about the National Opt-out and set your permissions here: https://digital.nhs.uk/services/national-data-opt-out
Who can I contact for further information?
If you have any questions or concerns, please contact the TwinsUK team on the details below and we will be happy to help.
020 7848 4444
Department of Twin Research
St Thomas’ Hospital Campus
4th Floor South Wing D Block
Westminster Bridge Road
London
SE1 7EH