Privacy notice

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.

Fair processing statement: Our principles for the care of your personal information

The United Kingdom Aneurysm Growth Study (UKAGS) is bound by the terms of the UKAGS Ethics approvals in place and is committed to protecting the privacy of participant’s samples and personal details.

UKAGS is a project sponsored by the University of Leicester. The University of Leicester is the responsible organization that collects and controls the data that we obtain from men participating in UKAGS.

When you supply any personal information and samples to this study we have legal obligations towards you in the way we deal with your data as follows:

• We will securely hold your samples and personal information on our systems for as long as needed to complete our academic research into the study of aortic aneurysm growth in men, and remove it at the end of the research, or at your request. We will ensure that all personal information supplied is held securely, in accordance with the Data Protection Act 1998 and, from May 2018, the General Data Protection Regulation.
• We will ensure that the information you submit to us remains private, and is only used for the purposes of research.
• Your personal information is only processed with your knowledge. Only information that we actually need is collected and processed. Your personal information is only seen by those who need it to do their jobs, and is only identifiable by your study number and not by your name/address/etc.
• Your information is securely stored and is protected from unauthorised access or accidental loss, damage or destruction.
• Your information and blood/urine samples are securely stored in locked cupboards in locked rooms within a lockable building. Access to these materials is strictly limited to personnel who need access in order to carry out research or manage participant data.
• All information requested is used solely for the purpose of academic research and is collected, stored and processed in accordance with the Data Protection Act 1998. We will treat your personal information as confidential and we will not disclose it to any third party except for purposes of academic research and only then in accordance with the Data Protection Act 1998.

What personal information do we collect?

To understand more about the causes and natural history of abdominal aortic aneurysm the UKAGS is collecting a large amount of information and biological samples from men both with, and without abdominal aortic aneurysms. We collect personal information to be able to manage the day-to-day activities of the project and also to study abdominal aortic aneurysm.

To be able to run the practical aspects of the study we have to be able to contact you and we therefore keep your name, address and, if supplied, email address on file. We also keep your date of birth and NHS/CHI number on file. If you die we are notified of this. This process is managed by the NHS. This is to avoid sending any study materials to your family in the event of your death. To enable this process we have to share your personal identifiable details with the NHS to indicate you are involved in the study (further details below). This process also provides us with information that we use for research purposes.

As part of the overall data collection process for research we obtain information about your medical history and on-going medical condition by asking you to complete questionnaires. As part of this process we ask you to tell us about your ethnic origin and this is recorded in your study records. No other sensitive personal information is collected. In addition to the data we collect directly from you, we obtain information about your medical history and health from electronic health records held by the NHS.

All personal information that can be used to identify or contact you (name, address, date of birth, NHS/CHI number) is stored in a separate database. All other information that we collect as part of the study is stored in a separate database.

Why and how do we access your electronic health records?

The NHS and your General Practitioner records information about your health in electronic databases for the purposes of organizing and delivering healthcare. The UK Government records information about all deaths in the UK in electronic format for statistical purposes. Information about hospital admissions, civil registration data (deaths) and some general practice data is accessible from central NHS organizations (NHS Digital (England and Wales) or the NHS Central Register (Scotland)). In addition, a few general practices contribute data to regional or national general practice research databases (if your practice does this you will have been informed). By accessing this information in this research study we can find out about what happens to you in the future without having to contact you directly.

As legitimate medical researchers, we can access all of this information providing we have your permission to use your personal details to do so. We do this in the following way. Using an NHS approved secure data transfer system we send your personal information (NHS or CHI number, name, address and date of birth) to NHS Digital (England) or the NHS Central Register (Scotland) together with a unique study identification number relating to the UKAG Study. These organizations then look up your records in their databases and return information about your health to us using just your unique study identification number. All information is transferred electronically as encrypted (scrambled) data. None of your information is sent by post or placed on removable electronic media such as CD-ROMs or memory sticks.

How we hold your information and samples?

We will securely hold your samples and personal information on our systems for as long as needed to complete our academic research into the study of aortic aneurysm growth in men, and remove it at the end of the research, or at your request. The Study is due to finish recruiting new participants in 2018 and we plan to find out what happens to all the men in the study for the foreseeable future. We will continue to contact you by post for up to 5 years after you join the study to obtain information about your health. After this we plan to use electronic health and death records to monitor men involved in the study for between another 5 to 10 years.

Your information and blood/urine samples are securely stored in locked cupboards in locked rooms within a secure building. Access to these materials is strictly limited to personnel who need access in order to carry out the Study.

All information requested is used solely for the purpose of academic research and is collected, stored and processed in accordance with the Data Protection Act 1998. We will treat your personal information as confidential and we will not disclose it to any third party.

Do we allow other medical researchers to access your data?

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 also 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.

Does anyone else have access to my personal information?

Other than the NHS organizations listed above your personal data will not be shared with any other organization or researchers.

How do I opt out of the study as a whole or a specific part of the study?

When we send you questionnaires to fill in each year you will be given the option to leave the study. You can request to either stop taking part in the study, or stop taking part and have all your information deleted from our records. We provide you with a postage paid envelope to return your response to us. After we stop sending you questionnaires, or at any other time, you can request to opt out of the study, or any part of it by contacting us by post, email or telephone (see contact details).