How we protect your information

We are committed to protecting your privacy. We will not share any personal information you provide with advertising or marketing companies, or insurance companies.

The United Kingdom Aneurysm Growth Study (UKAGS) is bound by the terms of the approvals given for the Study by the University of Leicester and the Health Research Authority.

Information you need to know

The United Kingdom Aneurysm Growth Study (UKAGS) is a project sponsored by the University of Leicester. Further information on the institution can be found on the website. The University of Leicester is the Data Controller for your information.

The University of Leicester’s Data Protection Officer is: Parmjit Gill, Information Assurance Services, University of Leicester, University Road, Leicester, LE1 7RH, and can be contacted by email at: dpo@le.ac.uk.

This privacy notice explains how we use your personal information and your rights regarding that information. For further information about the research study please see the Participant Information Sheet that you were provided with when enrolled onto the study.

What information are we collecting?

The data that we collect about you includes:

• Your name, date of birth and NHS/CHI number
• Your contact details (which we will use only where you have indicated that you wish to be involved in future parts of this research study.
• Your ethnicity data (collected from the information provided by you)
• Your medical data, including your medical history and on-going health and medical conditions (collected by asking you to complete questionnaires)
• Analysis of any samples provided by you, which may include analysis of DNA
• Routinely collected health information from NHS trusts and GP practices and screening results from the NHS Abdominal Aortic Aneurysm (AAA) Screening Programme (collected by accessing electronic health records held by the NHS*)

* This collaboration ensures that, in the event of your death, we are notified and can avoid sending any study materials to your family. To enable these processes we have to share your personal identifiable details with the NHS to indicate your involvement in the study. Please note, we will only access your electronic health records if you have voluntarily agreed to this happening by completing a relevant consent form.

Why are we collecting your data?

Abdominal aortic aneurysms (AAA) affect 5% of males over 65 years, and are the 8th most common cause of death in England and Wales. Most deaths occur because of aneurysm rupture, which causes 10,000 deaths per annum in the UK. Small aneurysms (<5.5cm) progressively expand and eventually rupture at much larger sizes.

This research aims to find out more about how and why abdominal aortic aneurysms develop and progress. This knowledge will be used to develop new treatments for aneurysms which will be aimed at preventing growth. In order to do this, UKAGS is collecting a large amount of information and biological samples from men both with, and without abdominal aortic aneurysms.

How will we use your data?

Your personal data is given a code or pseudonym at the point of collection so that you cannot be identified by the data you provide (except by those in the research team).

All information requested is used solely for the purpose of academic research and is collected, stored and processed securely in accordance with Data Protection legislation. Data will be processed and stored at the University of Leicester or the University of Leicester NIHR Biomedical Research Centre.

We will treat your personal information as confidential and we will not disclose it in any way other than that described in this notice.

Data and or/samples may be transferred and analysed in laboratories and by researchers outside of the University of Leicester, including overseas, but within the EEA. Where this occurs data and samples will be pseudonymised prior to dispatch. All data and sample transfers will be subject to approval by the project steering committee and formal transfer agreements, which include confidentiality clauses, will be established prior to transfer.

What is the legal basis for processing the data?

• The legal basis for the processing of the participant information that we are collecting and using for this study is that it is ‘necessary for the performance of a task in the public interest (Public Task)’ as set out in the Data Protection Act 2018 and UK GDPR Article 6.1.(e).Research is a task that is performed in the public interest.
• Our additional condition for processing special category information (relating to health and ethnicity) are: that it is necessary for ‘archiving in the public interest, scientific research or statistical purposes’ as set out in the Data Protection Act 2018 and UK GDPR Article 9.2.(j).

If we are sharing your data with others, who are we sharing it with?

One of the main benefits of this study is that we will generate a large amount of information about men who have been screened for aneurysms. To get the most benefit from this information it is important that legitimate medical research teams from outside of the University of Leicester can use this information. Data and/or samples from the study will only be shared with others for medical research purposes. If this happens, all personal information will be removed from any information that is shared, so that your identity will be protected.

How long we will process your data for?

The study finished recruiting new participants in 2018. We will now continue to follow-up the men in the study to find out what happens with their health in the future. We initially did this by contacting participants by post, but will continue to do this by accessing electronic health and death records until the end of 2038.

• Contact details will be kept for the duration of research activities.
• Consent forms and pseudonymised research data will be held for the duration of the research activities, and for a further six years after the end of the study, in accordance with the University’s data retention schedules.
• Collected samples will be kept after the conclusion of UKAGS, for use in other research projects in the future, including use by other research teams, including those outside of the University of Leicester, and potentially overseas.
• If you choose to withdraw from the study, we will keep the pseudonymised research data that we have already collected about you, but will not collect any further data. We will ask you whether you would like your samples destroyed, or if you would be willing to allow us to continue to study these samples. After which we will delete your contact details.

What rights do I have regarding my data?

You have the right to access, correct, or delete your personal data, to object to or restrict how it is used, to request its transfer to another organisation, and to avoid decisions made solely by automated processes.

Some of the above rights are not absolute. If you want to exercise any of the rights described above, please contact the University’s Information Assurance Team.

We will do our best to respond quickly and within the timeframes set out by data protection law. To help us handle your request and improve our services, we may keep a record of our communications with you.

Complaints to the University

If you are dissatisfied with the way the University have used your information, you should complain to the University’s Information Assurance Team.

Complaints to the ICO

If you are not satisfied with the way the University has handled your complaint, you also have the right to raise your concerns with the Information Commissioner’s Office (ICO). The ICO is an independent authority which oversees how personal data is used. Guidance on how to contact the ICO can be found at www.ico.org.uk.

Changes to this privacy notice

This privacy notice was published in December 2025. If you have any questions about this privacy notice or if you would like to access any of your rights, please contact Information Assurance Services: ias@leicester.ac.uk.