TestEd Data and Privacy

What happened to my data?

1. Registration form and survey

When you consent to the agreement to participate, you will enable us to access the data you provide on your registration form, the data resulting from regular tests of saliva in the samples you provide and the responses you provide through the online survey which is part of TestEd. All of this information is hosted on a secure server accessible only to the project team.

The data will serve two purposes only: first, to securely and confidentially convey your test results to you. The only members of the TestEd team with access to this data will be qualified IT professionals responsible for data protection and secure information management. Only anonymised data (which does not identify you) will be made accessible to TestEd researchers for the purpose of monitoring the progress of the project.

2. Analysis

Your anonymous survey data will be imported into quantitative data analysis software where it will be combined with others for analysis by the same research 3. team. The survey data will be retained on our server for a minimum of 5 years after the end of the study.

3. Publication

The anonymised results of TestEd will be analysed for research purposes and may be quoted in the reports and academic publications we write. Likewise, survey responses may be used in such publications. Your name will never be used in any of these reports or publications and they will not include any personal identifiable information about you. When we publish our findings, we will upload all of the anonymised data to an online repository. When using research repositories, researchers are often required to upload their supporting or underlying data. The repositories have technical controls in place to ensure that only authorised individuals can access the information.

Certain individuals from the University of Edinburgh and regulatory organisations may examine our research records to check the accuracy of the research study, and for audit purposes. They will only be able to access de-identified (coded) and unlinked information.

Can I withdraw/remove myself from the TestEd?

You can withdraw from the study at any time and do not have to give a reason for doing so.

If you decide to withdraw from the study, there are two options for doing so.

“No further contact” This means you will no longer be contacted by the study team. However, permission would still be in place to use the information and sample which you provided.

“No further use” In addition to “No further contact” this means that your data or samples could no longer be used in any future research, although it would not be possible to remove your information or sample from the current research.

You can contact the TestEd study team via tested@ed.ac.uk if you wish to withdraw.

Privacy notice

How we look after and use your data for the TestEd study.

This notice explains how we look after and use your data for the TestEd study. It also explains the measures that we take to ensure that your data is held securely and that it will only be used to for the purpose of the research study. Details are also provided on the length of time that we will hold your data for. There is also a contact provided for the University of Edinburgh’s Data Protection Office should you wish further information.privacy_notice.pdf