Kids Heart BioBank, The Children’s Hospital at Westmead

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About our service

The Kids Heart BioBank is a biobanking facility based at The Children’s Hospital at Westmead that coordinates the collection, storage and distribution of DNA from children and families with childhood heart disease.

We work closely with both clinicians and researchers, including the Heart Centre for Children, Kids Heart Research, and local and international collaborators.

Our biobank enables research into the causes of childhood heart disease, by studying the genetic code, contained within our DNA. Finding links between changes in our DNA and heart disease requires DNA from many patients.

By collecting DNA, our biobank accelerates research into the causes and cures for childhood heart disease.

Donation information

Participating in the Kids Heart Biobank is completely voluntary. Blood samples are collected through the normal course of treatment for patients at our hospitals, usually under general anaesthetic.

We provide these samples to researchers who analyse the DNA in the blood to better understand the genetic mechanisms involved in heart development to improve treatments for childhood heart disease in patients and their families. 

The amount of blood required for a sample is different for every patient, depending on their age. 

Consent and privacy

Providing consent

To participate in the Kids Heart Biobank, you will be required to complete a consent form.

Consent forms give permission for a patient’s sample to be stored in the Kids Heart Biobank and given to researchers studying childhood heart disease.

Withdrawing consent

If you want to withdraw consent, you will need to complete the withdrawal of consent form.

If you do not want to give consent, or later withdraw your consent, your relationship with your doctor will not change and the care you are provided at our hospitals will not be affected.

Privacy

Samples are de-identified when used in research. This means that at no time, will any personal details (e.g. patient name, phone number, address) be provided to researchers. The patient and family remain entirely anonymous to the researchers who receive samples from the Kids Heart BioBank.

DNA and clinical information is stored in a secure database, accessible only to the Kids Heart BioBank clinical research staff. The information and DNA can only be used by the study investigators of ethically approved research relating to childhood heart disease.

You can choose to be informed of results and findings relevant to you or your child. If you choose to be notified, this information will be discussed with you and your doctor. You will have access to a genetic counsellor who can assist with this and any questions you have.

Frequently asked questions

How much blood is required?

  • 0 - 2 years: 2ml or ½ teaspoon
  • 3 - 12 years: 5 mls or 1 teaspoon
  • 12 or older: 9 mls or 2 teaspoons

What is childhood heart disease?

Childhood heart disease is a broad term for heart problems in children. This includes congenital heart disease (such as holes in the heart), which may be present at birth. It also includes disorders of heart rhythm (such as long QT syndrome) or heart muscle (such as cardiomyopathy), which may develop later in childhood.

Some children with heart disease may require hospitalisation, heart surgery and treatment in an intensive care environment.

How long will the DNA sample be stored for?

DNA samples are stored indefinitely and are used in studies associated with childhood heart disease until the sample is used up.

When a participating child turns 18, we will contact them to confirm that they wish to continue their participation now that they are an adult.

Are there any risks to my child in this procedure?

There are no known risks associated with collecting the volume of blood.

The blood is collected at the time of surgery while your child is under anaesthetic or while your child is undergoing other clinical treatment.

What if you find something important in my/my child’s genes?

You can choose to be informed of results and findings relevant to you or your child.

If you choose to be notified, this information will be discussed with you and your doctor. You will have access to a genetic counsellor who can assist with this and any questions you have.

Information for clinicians

We collaborate with clinicians, researchers and health professionals. See our clinical hub page for more information.

Last updated Thursday 25th January 2024

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