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What is a biobank?
A biobank is a collection of biological samples, such as blood and tissue, and corresponding health information. Biobanks serve as a library for researchers. Instead of recruiting volunteers for each new project, researchers can use samples and information from the biobank that has already been collected. Information and samples gathered in biobanks can be shared with researchers in other countries. Sharing information in this way means research can be conducted on larger populations, allowing us to see the bigger picture. This could lead to a better understanding of cardiovascular health and the development of new treatments.
Why should I participate?
Participating in the Peter Munk Cardiac Centre Cardiovascular Biobank will help researchers advance cardiovascular research. Your decision to participate may impact future diagnosis, treatment options, and improve the outcomes of future generations of cardiovascular patients. Participation is entirely voluntary and your decision to participate will have no impact on your medical care.
What will I have to do when I join?
When you join the biobank, a blood sample will be drawn at the same time that you have routine bloodwork scheduled at the University Health Network. By joining the Biobank, you are consenting to allow Biobank staff to review your past, present and future medical records. Lastly, if you are having surgery at the University Health Network, we will keep a small sample of tissue that would normally be disposed as part of the routine procedure.
Will my samples and information remain confidential and secure?
Maintaining respect and privacy of our participants is a key mandate of the Peter Munk Cardiac Centre Cardiovascular Biobank. Each participant is assigned a number, and researchers who receive samples from our Biobank will not be given any information that could identify a participant. All electronic information is kept secure through measures such as encryption, passwords and restricted user access. All paper documentation and samples are secured through restricted physical access and security monitoring.
What studies might be done using the Peter Munk Cardiac Centre Cardiovascular Biobank?
The goal of the Biobank is to provide samples to researchers for diverse types of studies. Many of the studies will be focused on gaining a better understanding of how a person’s genes (DNA) may influence cardiovascular disease progression, or how differences in DNA influence patients’ responses to certain medications. Other studies may look to determine novel biomarkers that can be found in patients’ samples. These studies may permit the more timely diagnosis of adverse cardiac events.
Will I find out the results of the research?
You should not expect to get individual results from research done using your samples. The researchers using your samples may discover information about inherited changes in your DNA that may put you at a higher risk than other people for heart related and/or other diseases. Because DNA is inherited, the changes detected may also be relevant to your biological relatives (e.g. your parents, children, siblings etc.). This information may not be important for your current care but it may be important later on for the health of other family members. You and your family will only be informed of changes that have a known high risk of causing disease. Please note that we will only inform you of genes where there is a very high chance (more than 50%) of developing a disease and the results are confirmed in a clinical lab. When you join the Peter Munk Cardiac Centre Cardiovascular Biobank, you will be able to choose whether or not you want to receive this kind of information if it is found.
If something specific about my health is uncovered, will I find out?
Samples kept within the Peter Munk Cardiac Centre Cardiovascular Biobank will enable different types of research studies. Through individual studies, researchers may discover something about your current health, or potential future health risks. These types of discoveries are not expected, nor guaranteed. As a result, not every participant in the Peter Munk Cardiac Centre Cardiovascular Biobank will receive results. Medical research and knowledge is constantly evolving. As such, some results may be returned. A process has been set up for this purpose.
Who uses the samples and data from the PMCC CV Biobank?
Researchers from within the University Health Network and other affiliated research institutions globally are the primary users of the samples and data from the Peter Munk Cardiac Centre Cardiovascular Biobank.
How are my samples and information processed and stored?
Once collected, your samples will be processed in our Biobank Laboratory. All samples are snap frozen in liquid nitrogen tanks at -196 degrees Celsius until requested by a researcher.
The Peter Munk Cardiac Centre Cardiovascular Biobank samples are secured in liquid nitrogen tanks, and access to them is limited to restricted personnel. The building is under constant video surveillance. Personal medical information is stored in computers that are protected by electronic security measures.
How are participants chosen?
Any patient being seen at the Peter Munk Cardiac Centre is eligible to donate samples to and participate in the Biobank.
What will happen to my samples and information after I pass away?
If you pass away while your samples are in the Peter Munk Cardiac Centre Cardiovascular Biobank, they will remain there, which means the Biobank can continue to use them in the ways agreed upon in the consent form.
What if I change my mind about participating in the Biobank?
If you wish to withdraw your consent and/or samples, you can notify the Biobank by contacting us through email at
firstname.lastname@example.org or call us at 416 340 4800 ext. 5568. Once your consent is withdrawn, all biospecimens that have NOT already been released to a researcher will be destroyed and your health information will be deleted from our database.
How will my samples be identified?
All biospecimens are labeled with a barcode that is unique to each sample. To further ensure confidentiality, each participant is also assigned a unique participant ID which is used on sample documentation. This means that while relevant pathological details of the sample and de-identified participant information might be shared with researchers (e.g., gender, age, diagnosis, time of sample retrieval), the identifier that is provided to researchers is a unique sample number, and cannot be traced back to the donor.