If you participate in the study, we will need to use information from you and your medical records. This information will include your NHS number, name and contact details. People will use this information to do the 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 or contact details. Your data will have a code number instead.
We will keep all information about you safe and secure, and will follow current and future rules (such as the General Data Protection Regulations, also known as GDPR).
If some of your information is sent to approved researchers 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.
You can stop being part of the study at any time, without giving a reason. If you wish to withdraw from the study, please contact us to sign a withdrawal form to confirm your wishes regarding the use of the samples and data collected to date, and about further contact.
We need to manage your records in specific ways for the research to be reliable. This means that we won’t be able to let you see or change the data we hold about you.
If you agree to take part in EXCEED, we will invite you to take part in future studies, depending on your health status or your DNA. Details of these studies will be sent out when the study is ready to recruit participants. You do not have to take part – this will be your choice, if and when contacted.
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Find out more
If you are interested in taking part, you will be able to read more about the study in our information sheet before you sign up. You can also contact us with any questions by sending an email to firstname.lastname@example.org or by ringing us on 0116 252 5997.
More information is also available from the NHS Health Research Authority at www.hra.nhs.uk/information-about-patients/