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TEDS Data Access Policy

TEDS Data Access Policy

The 2010 MRC Review of Mental Health Research notes that 'TEDS is used by many researchers and has been a platform for a wide range of published studies.' More than 100 collaborators are actively conducting research using the TEDS resource, which we expect to continue with the extensive data that we will collect at age 21 and whose value is exponentially increased by the previous 20 years of data on this unique sample. These collaborations provide the best possible peer review of data at the practical level of using the data for analyses and publications. We have many emails from collaborators extolling the user-friendliness, easy access and high quality of the TEDS dataset. The major source of discovery of the TEDS resource has been through the many TEDS publications, especially a paper that outlines TEDS and its measures (doi: 10.1017/thg.2012.91).

Governance of access

As indicated by the large number of collaborators in TEDS, we are open to data sharing via collaboration. Access to the TEDS data is conditional on obtaining the agreement of a member of the core TEDS research team to collaborate and to oversee the project. Having obtained such an agreement, an applicant may be given access to metadata in the form of the TEDS data dictionary. The applicant, in collaboration with the collaborating member of the core TEDS team, will then be required to make a formal submission by means of the data request form (see below). In this form, the precise details of the proposed project must be set out including the aims, analysis methods and measures to be used. The data request form also includes a full statement of the guidelines for using TEDS data.

A new data request will then be reviewed by an Executive Committee formed of the TEDS Director, Deputy Director and Data Manager. The Executive Committee reserves the right to accept or reject any data request. A new data request is likely to be approved if the project is endorsed by a member of the core TEDS team, if the aims and methods are precisely stated and have a specific focus, if the research is novel and does not overlap with other projects already planned or in progress, and if the proposed analysis is feasible given the measures available. Where granted, approval for the use of data by collaborators is for a period of one year only, in order to avoid data being sequestered but not used.

The study team's exclusive use of the data

For the duration of the TEDS study, the study team will reserve the right to exclusive use of the study data to achieve the aims of the funded research, except where data are shared with collaborators at the discretion of the Executive Committee as outlined above. At the conclusion of the study, curation and sharing of the TEDS data (in anonymous form) will be entrusted to the KCL Research Data Management team.

Restrictions on shared data

In each new phase of the study, the consent form signed by TEDS participants states that their data may be shared, in anonymous form, with other researchers. Study data will not be shared in any form that would allow the participants to be identified.

Responsibilities of users of the data

External users of the TEDS data are bound by the terms of use set out in the data request form. The main responsibilities of such users are that they should only use the data for the purposes that they have stated in their approved data request form; that they should not share the data with users other than those named on the data request form; that they should complete their research project within a year; that they should consult with the Executive Committee before publishing any results; and that any changes to the original plans should only be made with the consent of the Executive Committee.

Initial expressions of interest

If you are interested in applying to use the TEDS dataset in collaborative academic research, please download our data request form (below) and read the guidelines contained therein. Then, if you have a plan for novel research in collaboration with TEDS, you should propose your plan to a member of the core TEDS team as listed in the form.

The data request form

In order to download a copy of the data request form (in Microsoft Word format), right-click the link below and select “Save link as…”
Download the data request form.