Make an Access Request

To view or gain access to data, please follow the steps outlined below. We will endeavour to get back to you as soon as we can.

To help design studies, Generation Scotland data can be viewed using our data explorer. The tool allows researchers to see summaries of demographic information, and explore linked data such as secondary care disease codes, CALIBER disease phenotypes, prescriptions by drug name and lab test resultss. There is a filter tool to estimate potential sample size for a study based on study criteria including various demographic and omics measures. A variable explorer allows researchers to identify variables of interest in GS questionnaires to help shape potential hypotheses. 

For any questions about data access contact us at GenScot@ed.ac.uk. 

Once a project is planned, applicants should fill out a collaboration proposal form. There is one form for Generation Scotland access and another for CovidLife access. An additional form needs to be completed for access to samples or for a recontact project. The form for access to samples is available on request. The other forms can be downloaded and completed here and returned by email to GenScot@ed.ac.uk.

Approval Process

Upon submission, these forms are reviewed by the Generation Scotland Access Committee , which meets regularly. Our aim is to review applications within 6-8 weeks of submission, but typically sooner.  Applicants are notified of the decision no later than 2 weeks after the meeting.

Data Transfer Process

If approved, each project is subject to a Data & Materials Transfer Agreement (DMTA) or commercial contract. It will need to be signed on behalf of the recipient institution. After the DMTA/contract has been signed, samples and/or data can be released. For your reference, you can view this below. You do not need to fill in this form. A DMTA specific to your study will be sent to you if it is approved.

Costs

If you would like to discuss access charges, please contact us at GenScot@ed.ac.uk.

Access by International Researchers

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Generation Scotland has consent for data to be used by researchers from around the world for medical research. However, the original consent given by Generation Scotland participants did not allow us to send samples to researchers in countries other than the UK.  We have since approached all Scottish Family Health Study participants seeking explicit consent to allow samples to be sent to researchers outside the UK, subject to the same ethical scrutiny as all other uses of Generation Scotland resources. The great majority of those who responded gave their consent.

Access Policy

Our policy explains procedures for managing access and the publication of data from Generation Scotland resources, which is used to guide the Access Committee. The policy follows on from the Generation Scotland Collaboration Agreement. We welcome feedback from potential users and other interested parties. Please e-mai GenScot@ed.ac.uk to give your feedback.

PDF Downloads of GS Access Policy

The Generation Scotland Executive gratefully acknowledges the ALSPAC (Avon Longitudinal Study of Parents and Children) Access Policy, on which the Generation Scotland Collaboration Agreement and the Management, Access and Publication Policy are based.

For more information, please e-mail GenScot@ed.ac.uk or call our office on 0131 651 8718.

Data Management and Linkage Policy

A unique study ID was applied to our data and samples at the point of collection. Personal information for study participants is held separately from all other study data, along with an encrypted version of the Communit Health Index. The key to the encrypted Community Health Index linkage is held in the NHS system and is not accessible by Generation Scotland. This process is described in the Data Access and Linkage Plan.