2. Who is collecting my information?

Key message: most study information is collected at the Clinical Trials Research Unit within the Leeds Institute of Clinical Trials Research, University of Leeds. Each study has one or more organisations that have overall responsibility for how your information is used. You can see which organisation(s) have this role for a study by looking in the patient information sheet you received before you joined.

Information will be collected at the Clinical Trials Research Unit within the Leeds Institute of Clinical Trials Research, University of Leeds. You can find out more about our work at https://ctru.leeds.ac.uk/. We have over 20 years’ experience of running studies, and tightly-controlled processes in place to make sure we use people’s information carefully and correctly when they take part in our studies.

In each study, there will be one or two organisations that have overall responsibility for what information is collected, how it is collected, and making sure all information is used securely and correctly. In legal terms, these organisations are known as the ‘data controller’ for each study. In the unlikely event that something went wrong with the study information, the data controller(s) would be responsible.

Each study patient information sheet will make clear to you who has overall responsibility for how your information is used, and who you should contact if you have any queries. In many of our studies, University of Leeds has overall responsibility. In some studies, University of Leeds will have joint responsibility with another organisation. In a few studies, another organisation has overall responsibility, and University of Leeds follows their instructions. In these cases, University of Leeds is acting as a ‘data processor’, in legal terms.

If you want to find out more about the University of Leeds, or contact someone within the University about how your information has been used, you can see section 9.

Data protection laws (including the Data Protection Act 2018) say that people’s information must only be used according to a set of principles. Whether or not we are the ‘data controller’ for a study, we will always work hard to make sure all information used in our studies is used according to these principles:

Information will be used lawfully: we will follow all aspects of data protection law, and only use information that we need for our research, which is in the public interest.
Information will be used fairly and transparently: before we use your information, we will make clear to you what the information will be used for, how it will be handled, what your rights are and how you can act on those rights. During and after the study, we will use your information in the way we said we would, and not do anything else.
We only collect and use your information for clear and specific purposes (which means for our research), and we will only use as much information as we need for these purposes, and no more than that.
We will spend a lot of time and effort making sure the information remains accurate, as this is vital to the reliability of our research.
We only keep information that could identify you for as long as we have a legitimate reason to keep it.
We ensure your information is stored and used in ways that keep it secure and confidential, and only accessible to people who need to access it for specific, valid reasons.