Click below to reveal answers to frequently asked questions about our studies and how to volunteer.
What is the study for?
This project aims to help understand how our genes affect our risk of cardiovascular disease, the leading global cause of death.
Studies involving hundreds of thousands of people have identified subtle changes in the DNA code of our genes that contribute to our risk of cardiovascular disease. The challenge ahead is to understand exactly how these changes or ‘gene variants’ affect disease risk and to translate this knowledge into new treatments.
Find out more about how we’re doing this here.
Who is eligible to take part?
We invite volunteers from the NIHR BioResource to take part in our studies, depending on whether that have the specific genetic changes we’re interested in. There are also a number of other factors about a volunteer’s health and demographics that might impact whether they’re invited to take part in our study, e.g. body mass index or a diagnosis of diabetes.
Invitations are sent to volunteers through the NIHR BioResource. Volunteers can express an interest and give permission to be contacted by a member of our study team. The study team will explain the procedure(s), check eligibility, and make the necessary arrangements for study visit(s).
How do potential volunteers tell us they do not wish to take part?
There is no obligation to take part. Potential participants who are approached to take part in these studies can let the NIHR BioResource or the study team member know. Participants are free to withdraw from the study at any time.
Who will benefit from the research?
While this research is unlikely to benefit the volunteers directly, we hope our results will help patients with cardiovascular disease in the future. Our aim is that the data from these studies informs the development of new and better treatments and more targeted prevention strategies to improve people’s health in the future.
What do volunteers have to do?
Each of these studies has slightly different research questions and, therefore, the requirements of participation may differ. For each study, full information is given to volunteers when they are invited to participate.
The studies require one or two study visits, understanding and giving consent, and completing a questionnaire about medical history, demographic and lifestyle factors.
Study-specific information regarding study data and/or samples required can be found on the Studies page. Our team can help answering any questions on the telephone, via email or at the study visit(s). You can find our contact details here.
Where will data and samples be stored?
All data and samples are stored at Strangeways Research Laboratory, Department of Public Health and Primary Care, University of Cambridge. Data will be stored in accordance with the General Data Protection Regulation (GDPR) 2018. Data and samples may be stored for many years while analysis takes place and will then be securely destroyed. Find out more about data privacy here.
Is my information kept confidential?
All the information given to us is completely confidential. We will not pass it to anyone, not even other members of the family, or participants’ GPs, without permission.
For the AADBIO study, we may request details from central UK NHS bodies such as NHS Digital, Public Health England and/or the Office of National Statistics on the participant’s health status. The reason for this is to make sure we have up to date and correct information, and to ensure the results of the study are as accurate as possible. To do this, we may have to pass on some information (such as date of birth, name, NHS number and address) so they can match this to their records and relay the relevant data back to us. Find out more about data privacy here.
Will individual results from laboratory experiments and data analyses be reported back to volunteers?
No, individual results are not reported back to the participant. In the unlikely event that an abnormal finding is discovered that may affect your health (for example, an abnormal blood test), you will be advised to contact your GP for follow-up. The overall results of our analyses will be published in scientific or medical journals to help the global research community to make progress.
I’m volunteering and have a question, who can I contact?
The Study Teams will be happy to answer any questions you may have. You can email us or we can be reached by telephone, using the details on the Contact page.
Who is carrying out the study?
All studies involving volunteers are approved by Research Ethics Committees. The studies presented here are carried out at the Cardiovascular Epidemiology Unit, University of Cambridge.
The Chief Investigators responsible for the studies and storage of your sample(s) and data on behalf of the University of Cambridge are Dr Dirk Paul and Dr Seamus Harrison. Other members of the team are listed on the Contact page.
Will my data be passed on?
We may from time to time collaborate with other research groups, if working together will help our research to make progress faster. Any data shared in this way will be anonymised and all such arrangements will be subject to the agreement of our research team and of an independent Research Ethics Committee.
What is the legal status of my involvement?
Samples from volunteers will be used for academic (non-commercial) research purposes only. In a legal sense it will be treated as a ‘gift’ to the University of Cambridge, and participants will have no claim over the sample should the results of this research lead to commercial development.
How can I help?
See the Getting involved page for information on how to sign up to the NIHR BioResource and other ways you can contribute to research.
You can also help by supporting the British Heart Foundation, one of the main charities that funds our research.