Documentation
Associated Media:
Description:
The TwinsUK cohort (https://twinsuk.ac.uk/), set up in 1992, is a major volunteer-based genomic epidemiology resource with longitudinal deep genomic and phenomics data from over 15,000 adult twins (18+) from across the UK who are highly engaged and recallable. The cohort is predominantly female (80%) for historical reasons. It is one of the most deeply characterised adult twin cohort in the world, providing a rich platform for scientists to research health and ageing longitudinally. There are over 700,000 biological samples stored and data collected on twins with repeat measures at multiple timepoints. Extremely large datasets (billions of data points) have been generated for each TwinsUK participant over 30 years, including phenotypes from questionnaires, multiple clinical visits, and record linkage, and genetic and ‘omic data from biological samples. TwinsUK ensures derived datasets from raw data are returned by collaborators to enhance the resource. TwinsUK also holds a wide range of laboratory samples, including plasma, serum, DNA, faecal microbiome and tissue (skin, fat, colonic biopsies) within HTA-regulated facilities at King"s College London.
More recently, postal and at-home collection strategies have allowed sample collections from frail twins, our whole cohort for COVID-19 studies, and for new twin recruits. The cohort is recallable either on a four-year longitudinal sweep visit or, based on diagnosis or genotype.
More than 1,000 data access collaborations and 250,000 samples have been shared with external researchers, resulting in over 800 publications since 2012.
TwinsUK is now working to link to twins’ official health, education and environmental records for health research purposes, which will further enhance the resource, education and environmental records for health research purposes, which will further enhance the resource.
Coverage
Spatial:
United Kingdom
Typical Age Range:
18-100
Follow Up:
Other
Pathway:
Fit and well
Provenance
Origin
Purposes:
Study
Collection Situations:
- Clinic
- Home
Temporal
Accrual Periodicity:
Irregular
Start Date:
01 January 1992
Time Lag:
Variable
Accessibility
Access
Access Service:
To access access the TwinsUK data or if you are interested in proposing a
collaboration with us, please first read through the Data Access Policy Document
which will give you the necessary background information. You will then need to
complete a “Data Access Proposal Form” and email the completed form to the Data
Access Manager Victoria Vazquez for consideration by the Department of Twin
Research Executive Committee (TREC). We encourage collaboration either on the
analysis of these phenotypes or on novel phenotypes. The proposal should specify
the data and/or samples required clearly. Individual variables need to be listed
with an appropriate justification describing the aims/hypothesis of the project
for which the data is requested. No attempt should be made to link or combine
the data provided under this agreement to other information or archived data
available for the data sets provided, even if access to that data has been
formally granted to you, or it is freely available without restriction, unless
specific permission to do so has been received from the TwinsUK TREC. Please be
aware that our governance does not allow extensive, untargeted AI data requests
and therefore we will not be able to support these applications. There may be
costs associated for your request to be fulfilled.
Access Request Cost:
TwinsUK operate on a cost recovery basis regarding data provision. Current
application costs for data are as follows: £1140 – for basic and published
datasets £1620 – for omics data £570 – for Data Access amendments Please note:
Requests for samples, new data collections and non-standard and complex data
access proposals will be subject to bespoke costs
https://twinsuk.ac.uk/resources-for-researchers/our-data/
Delivery Lead Time:
Not applicable
Jurisdictions:
- GB-ENG
- GB-GBN
Data Controller:
King"s College London
Data Processor:
King"s College London
Usage
Data Use Limitations:
General research use
Data Use Requirements:
- Not for profit use
- Project-specific restrictions
- Return to database or resource
- User-specific restriction
Resource Creators:
TwinsUK is funded by the Wellcome Trust, Medical Research Council, Versus Arthritis, European Union Horizon 2020, Chronic Disease Research Foundation (CDRF), Zoe Global Ltd and the National Institute for Health Research (NIHR)-funded BioResource, Clinical Research Facility and Biomedical Research Centre based at Guy’s and St Thomas’ NHS Foundation Trust in partnership with King’s College London.
Format and Standards
Vocabulary Encoding Schemes:
LOCAL
Languages:
en
Formats:
- MS Excel
- CSV
- SPSS
- Stata
- R
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
Volunteer adults females and males (predominantly females) living in UK at time of recruitment. The dataset includes single twins, twin pairs and triplets (identical and non-identical).
15000
Count
31 December 2021