What are my data protection rights?

If you stop taking the study pills and do not wish to have further blood samples to be collected at your study clinic, it
would be very helpful if we could keep in touch by phone. However, you can also decline to be contacted again. In this case, we would like to continue to follow how you are getting on by contacting your local doctor (eg your GP/primary care physician) or through national registries or other publicly available sources of data.

If you decide you do not want any new information about you to be collected and used for the study (known as “withdrawal of consent”), we will ask you or your local clinical team to sign a form and will not collect any further information from you. All information collected, including analysis results from blood and urine samples that have been already collected, will still be kept and used for the study. Although no further information will be collected from you after withdrawal, the study will use death records which are publicly available to help ensure complete information and a reliable result. Such data would still be recorded.

If you have previously given consent for us to use leftover blood and urine samples and related information which had been collected in the study, you may also separately withdraw your permission for this optional part of the study at any point in time, without affecting your participation in the main part of the study. Any samples that you no longer wish for us to store or use will be destroyed. 

You have the right to request to know what personal data the University of Oxford and Boehringer Ingelheim hold about you and to have a copy of that data. Your local study nurse could provide this, however, to ensure the study’s scientific integrity, you may not be able to review such data until after the study has been completed.

You also have the right to to request to correct wrong or outdated personal data. However, the study site and
Boehringer Ingelheim (as the study’s sponsor) may be obliged by law to keep your data to ensure consistency and reproducibility of the results and we cannot delete data that has already been used in analyses (note that analyses are run regularly throughout the study).

You also have the right to request to restrict or object to what we do with your data. However, sometimes the data
controllers may not be able to (or have grounds not to) follow a request from you, for example, if we consider that deleting your data would seriously harm the research. If you would like to exercise any of these rights, please contact us. The data protection officer for the University of Oxford can be contacted by email at: data.protection@admin.ox.ac.uk.