This page sets out General Data Protection Regulation (GDPR) information for study volunteers, including how the NIHR BioResource and our studies ensure privacy around the data that you may provide to help research.
Data privacy
To maintain confidentiality, each volunteer is assigned a study number that will be used throughout the study. All samples will be stored and referred to by the number only, and test results obtained from your sample will be stored in laboratory notebooks and research databases linked only to your unique sample number.
Anyone who takes part in the Cardiovascular BioResource studies and gives data does so anonymously. The study team only needs basic information, such as your name and contact details, to arrange study visits and ensure you’ve given informed consent to take part. None of the research team using your samples will know the identity of the volunteer that donated them.
With your permission, we will inform your GP of your participation in this study so that any decisions they make about your clinical care are made knowing what study procedures you have been involved in.
To learn more about how the NIHR BioResource keeps your data safe, please visit the Governance and Ethics pages of their website here.
Data sharing
We may share the anonymous data from our study with other researchers in line with national and international data transparency initiatives to help improve global research efforts.
The anonymised data generated in this study may also be used to support other research in the future, such as a larger follow-on study to this pilot study.
Any identifiable data about a volunteer recorded in study documentation during the study (e.g. the completion of Informed Consent) will be archived alongside other study related documentation and data in a secure location in accordance with the sponsors’ standard operating procedures, policies and procedures for a minimum of 5 years.
If you would like more information or have any queries, please contact us.
Withdrawing consent
If you have taken part in any of the studies listed on this website, you are free to withdraw at any time without giving a reason.
If you withdraw from a study, your remaining sample(s) will be destroyed and we’ll generate no further data. However, already distributed material will not be withdrawn and will continue to be used on the project.
A decision to withdraw or not to take part will not affect the healthcare or any future medical treatment you would normally receive. The Study Team may also choose to withdraw you from the study if they feel it is in your best interests or if you have been unable to comply with the requirements of the study.
- If you have taken part in CADBIO or GENBIO and wish to withdraw from the study, please contact the study team by email to helpdesk@cadbio.org.uk.
- If you have taken part in AADBIO and wish to withdraw consent for us to contact you with any queries, obtain further data from health or PHE data, or use any of your data at all (complete withdrawal from the study) please contact the relevant team by email to helpdesk@cadbio.org.uk.
- If you would like to withdraw from NIHR BioResource, please email nbr@bioresource.nihr.ac.uk. You can find out more about the NIHR BioResource’s withdrawal process here.
If you would like more information or have any queries, please contact us.