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Heart Centre Biobank Participant Newsletter
issue 06: April 2019

Events

All Heart Centre Biobank events are currently postponed until further notice due to COVID-19. We thank you for your patience and understanding, and we will update as soon as we can!

Labatt Family Heart Centre Family Conference

Event open to: All families of the Heart Centre, and those affected by paediatric heart disease.

Registration instructions: CURRENTLY CLOSED www.cvent.com/d/rhqzk8

The Annual Labatt Family Heart Centre Family Conference brings children, their families and health professionals together to share information about heart disease.

This year’s theme is “Family Resilience: Harnessing Strengths and Coping with Illness,” featuring keynote speaker Dr. Lina McWhorter, PhD, whose clinical research focuses on parents and the impact of medical traumatic events on the family.

For more information, please email: info.heartdiseaseconference@sickkids.ca

PROCEED Mini Symposium

Location: Peter Gilgan Centre for Research and Learning

Registration instructions: CURRENTLY CLOSED
RSVP to invitation

For more information, please email: heartcentre.biobank@sickkids.ca

FAQ

Who can participate? How do I participate?

Patients who have been diagnosed with congenital heart disease, cardiomyopathies or those who are at risk of heart disease are eligible. Family members or unrelated healthy individuals are eligible to participate as well. Please email us (heartcentre.biobank@sickkids.ca) or give us a call (1-866-489-7711) to discuss further.

Why should I participate?

While there is no direct, individual benefit, participation helps advance health research in general. Our research leads to new discoveries such as tests, drugs, or devices.

What can you learn from my samples?

What researchers can learn from your samples depends on the type of sample being collected and/or the research being conducted, since samples may be used for current or future research projects. We may be able to extract DNA, RNA, protein and/or cells for molecular and genomics research. This includes searching the entire genome for variants that may be linked to your specific condition. Information learned from research projects can aim to improve the medical knowledge specific to different heart conditions and look for better diagnostic measures, overall outcomes, or treatments.

Who will know if I participate?

Medical history, samples, and other data will be de-identified, meaning all identifying information will be replaced with a study code. Genetic information derived from this study will not be part of your medical records. Any research findings shared with the broader scientific community that is available through public repositories will also be de-identified. All records are stored securely and only accessible to approved research staff for approved research.

Will participating or not participating affect my treatment?

No. Participation is voluntary.

Can I give some samples but not others?

Yes, you have the right to choose whether you consent to participate in some, all, or none of the samples we wish to collect. When you are signing consent with a coordinator, you can let them know if there are any samples you are not comfortable with us collecting. If you have consented and you change your mind, contact us and we can update your choices.

What happens if I change my mind about participating?

You can ask to withdraw at anytime. Please email us (heartcentre.biobank@sickkids.ca) or give us a call (1-866-489-7711).

Will I know when and for what research my samples are being used for?

Studies supported by the Biobank and their discoveries will be shared via annual newsletters, our website, and social media. Please provide us with your email address to keep up-to-date. Individual results are not typically shared unless researchers identify a finding that may be important to you and/or your family’s health. In these situations, we will try to contact your physician and/or a genetic counselor to ask if you would like to receive these results and have them clinically confirmed.