The TwinsUK cohort is one of the most genotyped and phenotyped in the world and extensive biological and questionnaire data are available on hundreds of phenotypes.

We aim to facilitate and encourage the sharing of data and material from the TwinsUK cohort with the world’s scientific community to promote and contribute to scientific research and generate new knowledge.

TwinsUK is an open access resource for the research community in line with our Wellcome Trust funding. Our aims for this resource are:

  • To facilitate multidisciplinary research and general access to both phenotypic and genotypic data for a diverse set of clinically related traits
  • To publish in peer reviewed journals as well as creating an open forum to interact with the scientific community

Management of applications for data and samples is the responsibility of the TwinsUK Resource Executive Committee (TREC).

Cohort profile

The cohort currently comprises around 14,000 identical and non-identical twins aged 16 to 103 from across the UK. Female twins predominate and overall the mean age is 55 years.

Requesting new data and samples

We accept proposals that request the collection of new data. Applicants can propose collection of new data at twin research visits, via email or by postal questionnaire. We coordinate all proposals to collect additional data to ensure that the twins are not overburdened.

For details on the collection of new biological samples, please read our Data Access Policy.

All proposals to collect additional data as part of our twin visits are coordinated by our team at the Department of Twin Research to ensure that the twins are not overburdened.

Applicants can request collection of new questionnaire data in one of two ways:

  1. By sending out a short questionnaire to all active and eligible twins in the registry.
  2. By submitting questions to go into our annual questionnaire, sent out in spring each year. To be eligible for this method, you must submit your proposal by November 30th.

We are occasionally able to send out questionnaires at other times of the year however, this may incur costs due to the logistics of sending out individual questionnaires.

Guidance for questionnaire-based proposals:

  • We accept proposals for questionnaires that cover a range of phenotypes, from clinical to psychological.
  • We advise that you submit short questionnaires where possible; about 20 questions per subject is recommended.
  • Where possible, applicants must validate questions with a high degree of reliability and internal consistency.
  • For non-validated questions, applicants must formulate and pilot the questionnaire before acceptance, providing proof of piloting and reliability.

For applicants who fund the collection of specific new data, we provide embargoed exclusive data access for twelve months or after the first publication is accepted (whichever comes first). After this period, the data will be available to the scientific community via Open Access.

Submission procedure

1. Register for an account

To apply for access to TwinsUK data and samples you must first register for an account. We also recommend reading our DTR Data Access Policy.

Register an Account

2. Log in and complete our data access form

To access data or samples from TwinsUK, or to propose a collaboration with us, you will need to complete and submit a Data Access Proposal Form for consideration by the Twin Research Executive Committee (TREC).

Please ensure that your data request includes all phenotypes that you will require for your research as well as potential confounders for the analysis. Any requests for additional data after initial processing of your application will require you to submit a new Data Access Proposal Form.

3. Application is reviewed

The TwinsUK Resource Executive Committee (TREC) meets weekly to consider submission of proposals. The independent Access Committee oversees decisions on the most complex proposals for CLS Cohorts. For more information on the CLS Access Committee, please click here.

Once reviewed TREC may request changes to proposals based on the phenotypes requested, analyses proposed, or overall feasibility of the proposal. To make any amendments and to resubmit your proposal please log in to your account and amend your existing Data Access Proposal Form.

4. Pay any fees and set up agreements

Applicants must meet any costs incurred by the Department of Twin Research in facilitating access to requested data and samples.

Once approved, we will discuss and agree costs of data or sample requests with the applicant. Costs will vary depending on the type of proposal, and the clinical or statistical expertise required. We will always indicate the level of work required for each project and may reject a proposal if the costs of the project make it unfeasible.

We encourage all applicants to ensure they list all required phenotypes and variables as a charge will apply for further requests for the same project.

If applicable, we will set up a Material Transfer Agreement (MTA).

5. Data and samples released

Applicants should not attempt to link or combine the data provided 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 TREC.

6. Publication and acknowledgements

All publications and presentations resulting from access to our data and material must include the following acknowledgement:

TwinsUK is funded by the Wellcome Trust, Medical Research Council 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.

This acknowledgement applies to all articles published in printed journals, electronic journals, reviews, books, posters and other written and verbal presentations of research.

TREC requests that applicants submit all publications for review to confirm that the relevant acknowledgements have been included, and log the publication for our records.

Under the Open Access model, we cannot guarantee data exclusivity. If there is a possibility of projects overlapping, TREC may facilitate contact between research groups and invite you to discuss your ideas before you proceed with your request.

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