Transparency Statement under General Data Protection Regulation (GDPR)
The Cambridge University Hospitals NHS Foundation Trust is the sponsor for the Research Tissue Bank and the IBD BioResource study based in the United Kingdom. We will be using information from you and your medical records in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. University of Cambridge and the Cambridge University Hospitals NHS Foundation Trust will keep identifiable information about you for 10 years after the study has finished, and we may approach you to extend this.
How will we use information about you?
This information will include your:
- Full name
- NHS number
- Date of birth
- Contact details including address, phone number and email address
- Name and contact details of your GP
- Health-related information e.g. on your lifestyle, disease history, medication etc.
- Genetic information that will be generated from your blood or saliva samples
- Medical information provided by e.g. NHS health-related central records, disease registries etc.
People will use this information for research or to check your records to make sure that the research is being done properly. People who do not need to know who you are will not be able to see your name, NHS number, date of birth or contact details (which are your “personal identifiable information”). Your data will have a code number instead. We will keep all information about you safe and secure. Some of your information, but not your personal identifiable information, may be shared with researchers and service providers within and outside the UK (for example some of the genetic analysis is done overseas). They must follow our rules about keeping your information safe. Once we have finished the study, we will keep some of the data so we can check the results. We will write our reports in a way that no-one can work out that you took part in the study.
What are your choices about how your information is used?
We need to manage your records in specific ways for the research to be reliable. We will be able to let you see the data we hold about you. We will be able to change some of the information we hold about you (for example your contact details and contact preferences) if you ask us to; however, we won’t be able to let you change other data we hold about you (such as your genetic information for example). You can stop being part of the study at any time, without giving a reason, but we will keep information about you that we already have. There are then two options:
1. ‘‘no further contact’ withdrawal: with this option we will stop further contact with you, but we would like to continue collecting information about your health from central NHS records, your hospital, your GP; and continue to use data from your existing samples for research.
2. ‘no further use’ withdrawal: If you do not want any more data to be collected, or your data to be used further tell us and we will stop using your information and destroy your remaining sample, as well as stopping further contact with you.
Where can you find out more about how your information is used?
You can find out more about how we use your information
- at www.hra.nhs.uk/information-about-patients/
- our privacy notice available from https://bioresource.nihr.ac.uk/about-us/governance-and-ethics/ , which includes the sponsor’s Data Protection Officer contact details
- by asking one of the research team
- by sending an email to firstname.lastname@example.org or email@example.com
- by ringing us on 0800 090 2277 or 0800 090 2233.
For further information about the use of data in research, please click here.
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