Privacy notice

We are a research team at Newcastle University based in the Royal Victoria Infirmary Hospital in Newcastle-Upon-Tyne. We would like to tell you about our research, how we use the information we have about you, how you help us, and how our research might help you.

If you had a CT scan or cardiac catheterization here in the UK, while under 22 years old, before 2021, you might be part of our research.

Where did we get our information?

We get our information from participating hospitals in the UK and the NHS, and we have information from 1985 to 2021. It was obtained from the hospital and NHS’s computer systems.

The types of information we collect about you:

• Your name and date of birth
• Your postcode
• The type of exams you had, and how they were carried out (one of the main things that we’re interested in)
• Details of if you have had cancer

This information helps us find out the best way to carry out these kind of examinations, to help keep you as safe as possible after having them, and to try and make sure you don’t have any unexpected or nasty effects from them.  Your information is protected by something called the General Data Protection Regulation (GDPR) and makes sure we properly look after the information we have about you.

We might keep your information for up to 15 years after our study is finished, this allows us to go back and check any of this information if we need to.

How data are stored:

We have to make sure no one who isn’t allowed to see your information can’t see it. We store your information on our computer network, and only those people involved in our research are allowed to see it. We also remove your name and replace it with a number, so we can’t tell who you are when we work on your information and do our research. This also helps keep your information safer. We also work in a part of the hospital that you can only access with an ID card, and it helps keep anything we might have written down about you safe.

Who helps us:

We share some of your information with others doing research alongside us. We’ve shared some of your information with people who help us in the USA and France, and are currently working with a group in Spain. They gather information from all over Europe on other people just like you, as putting more data together can make the research we do even more useful. But they only ever see the number that we’ve given to you, not your name. And we never share your information with anyone else.

Your information is still your information:

The people who look after your information is Newcastle University. People working for something called the Information Commissioner’s Office (or ICO) let us work on your data, as long as we follow the rules of the General Data Protection Regulation (GDPR) and Data Protection Act 2018. Our Data Protection number is Z5470161. One of the people who helps us look after your data at Newcastle University and makes sure we follow the rules is Maureen Wilkinson, and you can write to her at the email address: rec-man@ncl.ac.uk or by sending a letter to: Data Protection Officer, Newcastle University, Blackhorse House, 91 Sandyford Road, Newcastle Upon Tyne, NE1 8HQ, United Kingdom.

As it would be very difficult to ask everyone in our research if they’d like to take part (this would be hundreds of thousands of people!), we have special permission to allow us to do our research and use your information. This is given by a group called the Confidentiality Advisory Group (CAG), under part of something called the National Health Service Act 2006.

But you can still see what information we have about you and tell us how you would like us to use or not use it. You can even tell us that you don’t want us to use your information at all. Or tell us that we have something wrong in our information.

To find out about what information we have about you or would like to ask us anything about your information, you can do so by writing to the following email address:

rec-man@newcastle.ac.uk

If you would like to contact us, or find out more about us, here is our address and website:

Address: Radiation Epidemiology, Newcastle University, Level 3, Sir James Spence Institute, Royal Victoria Infirmary, Queen Victoria Road, Newcastle upon Tyne.

Website: https://research.ncl.ac.uk/radiation/