Cardiovascular Biobank Information for Patients

Biobanks play a crucial role in advancing medical research by collecting and storing biological samples that can be used to improve our understanding of diseases and develop better treatments.

What is a biobank?

A biobank is a collection of biological samples donated by patients that are stored for research purposes. These samples are typically collected during routine medical procedures, such as a blood tests or biopsies, and are stored for future use by scientists. The samples are always considered ‘extra material’ and are not required for diagnosis or treatment, ensuring that the collection process does not impact patient care. All tissues obtained will be those normally disposed of during routine surgery. Blood samples will be taken as an extra amount during routine sampling or as a separate sample.

Purpose of the Cardiovascular Biobank

The Cardiovascular Biobank collects tissue, blood, and medical information from people with potential heart and blood vessel illnesses, as well as from healthy individuals. The biobank’s primary advantage lies in its ability to provide researchers with comprehensive clinical data alongside biological samples, enabling them to address important health questions and enhance future care. By having a biobank, the need for repeated patient participation in research is minimised.

How to Participate

Patients may be identified as a potential candidate for our biobank during appointments with doctors, or when scheduled for surgeries or procedures involving the removal of unhealthy tissue. Invitations to participate will be extended to patients receiving cardiovascular care at our hospitals at convenient times during their clinical journey. Patients who attend the hospital for investigations, follow-ups, or a procedure related to a cardiovascular condition may be invited.

Some patients will be approached to donate samples during clinic appointments, while others may be invited prior to scheduled procedures. Consent for sample collections and research use will be obtained through a consent form, which should only be signed after patients have had adequate time to understand the biobank’s information. You can find a copy of the Patient Information Sheet here (pdf) and the consent form here (pdf).

Samples collected, storage and use

Our biobank collects samples from patients being cared for at King’s Health Partners (KHP), including at Guy’s and St Thomas’ Hospitals, Royal Brompton and Harefield Hospitals, and King’s College Hospitals. Samples are processed and stored at the King’s Academic Department of Vascular Surgery at St Thomas’ Hospital.

We collect samples from adult patients with cardiovascular conditions such as aortic aneurysms, intermittent claudication, heart failure, and inherited cardiac conditions. Additionally, tissue samples from healthy individuals are collected to serve as ‘controls’ in research. There is a healthy donor information sheet (pdf)  and healthy donor consent form (pdf) available for download.

These samples are vital for understanding various aspects of disease, from how it begins and progresses to how it responds to treatment. By analysing samples from different patients and at various stages of disease progression, researchers can identify biomarkers, biological characteristics, and treatment effectiveness which are essential for developing new therapies and enhancing existing knowledge of disease and treatments.

Patient data

The biobank collects comprehensive demographic and clinical data from patients, including laboratory test results and treatments details. The information is securely logged in a database in accordance with the Data Protection Act 2018, GDPR and local policies by trained biobank team members. Each patient is assigned a unique biobank identification number, and their data is anonymised to protect privacy while allowing valuable research to proceed. Researchers receive fully anonymised data, ensuring that personal and identifiable information is never disclosed. You can read more about how your data will be used on the NHS Health Research Authority website.

Benefits

While donating samples to a biobank might not have immediate benefits for individual donors, it significantly contributes to the advancement of medical research. Your generosity can lead to breakthroughs in understanding cardiovascular diseases, the development of improved diagnostic tools, and the discovering of more effective treatments. This contribution helps enhance patient care for future generations.

Feedback

For any queries, to provide feedback or to take part in our Patient Public Involvement (PPI) group, please email the biobank team at cardiovascular.biobank@kcl.ac.uk.

Frequently Asked Questions

Do I have to take part if I am approached to do so?

• The short answer is no. Your involvement is entirely optional. You have the freedom to decline participation or withdraw from the project at any point without needing to provide a justification. Choosing not to participate or withdrawing will have no effect on the medical care you receive whatsoever.

Who will have access to my data and how will it be handled?

• Your information will be securely stored in databases managed by trained members of our biobank team. Rest assured that all data provided to researchers is fully anonymous, and no personal identifying information is ever disclosed.

Will donating samples to the biobank affect my treatment?

• Donating samples to the biobank has no impact on your current or future care.

Will my genetic data be used by commercial companies?

• Researchers accessing samples from the biobank may engage in collaborations with commercial companies to accelerate research breakthroughs. In such partnerships, your genetic data might be utilised by these companies. It is crucial to stress that all samples provided for research purposes are thoroughly anonymised and there is no possibility of any biobank user tracing them back to you.

Can I find out what research my samples have been used in?

• Although we cannot offer feedback on individual research studies that access your samples, our bi-annual newsletter will provide you with an understanding of the research our biobank is contributing to.

Can I withdraw from the Biobank?

• If you decide you do not want to be part of the biobank anymore, just tell us. You will not be further contacted, but we will keep your samples and any information we got from them. You can leave whenever you want, and your decision will be respected and will not affect your current or future care in any way.

What happens to my samples after I die?

• Even after you pass away, your samples and data will continue to be accessible to researchers until depleted. However, we will talk about this when and if you decide to donate samples, ensuring you understand everything before making your choice.