9. What if I have concerns about how my information is being used?

Key message: if at any time you have questions or concerns about how your information is used that aren’t answered by this information or by talking to your study doctor or nurse, you can contact the relevant Data Protection Officer (see your study patient information sheet for details). If you are still not satisfied, you can contact the Information Commissioner’s Office.

If you have a question or concern about how your information is used in one of our studies, you should first check the information in the patient information sheet you were given before you agreed to take part in the study. Your study doctor or nurse may also be able to help advise you.

If you would still like more information, you should contact the relevant Data Protection Officer for the study. Every organisation has a Data Protection Officer, who is their main contact for anything to do with how your information is used. The person to contact will be listed in your study patient information sheet. If you need another copy of that document, talk to your study doctor or nurse.

The details of the Data Protection Officer at University of Leeds can be found on this webpage: https://ctru.leeds.ac.uk/privacy/, though you should know that this might not be the best person to contact about a particular study. The University of Leeds data controller registration number provided by the Information Commissioner’s Office is Z553814X (https://ico.org.uk/ESDWebPages/Entry/Z553814X). The general postal address for the University is University of Leeds, Leeds LS2 9JT, UK.

If you are not happy with the Data Protection Officer’s response to any queries or complaints, or believe your information is being used incorrectly or unlawfully, you should contact the Information Commissioner’s Office if you are based in the UK:

  • General website: ico.org.uk
  • ICO contact webpage: ico.org.uk/global/contact-us
  • Telephone number: 0303 123 1113
  • Postal address: Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF

If you are not in the UK, you should contact the relevant supervisory authority for data protection in the country where you live.