DNA Bank
The Kids Heart Research DNA Bank is a collection of DNA samples from individuals who have been treated for congenital heart disease at The Children’s Hospital at Westmead. These samples are a critical resource to support our genetic research.
Identifying the cause of congenital heart disease
To date there is still no known cause for the majority of congenital heart diseases.
Our research aims to establish links between changes in genes known to be involved in heart development and heart disease. To do this research we need to analyse DNA from large numbers of patients. Together with other research groups in Australia and around the world we are trying to identify the causes of congenital heart disease to improve our understanding of this condition and to develop better treatments.
The Kids Heart Research DNA Bank
We began collecting DNA samples from patients with ‘holes in the heart’ (ASDs and VSDs) in 2003. This was part of a small study looking into the genetic mechanisms involved in causing holes in the heart.
In 2007, we set up the Kids Heart Research DNA Bank. We expanded our collection to include samples from patients with any type of CHD, and broadened our research aims to cover CHD in general.
How is a sample collected?
A small sample of blood is collected from patients during surgery or catheterisation at The Children’s Hospital at Westmead. The amount of blood varies from 2 ml (½ teaspoon) to 9 ml (2 teaspoons), depending on the age of the patient. The DNA is extracted from the white blood cells in the blood sample, processed and stored in the DNA Bank.
Who can take part?
Anyone affected by any type of structural heart defect and having treatment at The Children’s Hospital at Westmead can participate. Participants are usually recruited during their stay at the hospital.
In 2007 the DNA Bank was expanded to include samples from parents of affected children (known as trios) as well as controls (individuals with no history, past or present, of CHD). Both groups, particularly the controls, are important for comparative research, and are essential to any study.
Samples from parents and controls can be collected at The Children’s Hospital at Westmead by appointment. We have also set up a contract with Symbion Laverty Pathology so participants can have their blood samples collected at their nearest Symbion Laverty Collection Centre.
DNA samples: access and security
All identifying information for stored samples of DNA is removed. Samples are given a unique computer-generated number which corresponds to the DNA Bank database. This database is confidential and secure and only accessible to the manager of the DNA Bank and the Genetic Counsellor. In this way samples are de-identified but are potentially re-identifiable using the numbered code.
The information stored in the database, as well as the DNA, can only be used by The Children’s Hospital at Westmead and their approved collaborators and colleagues working in research related to CHD. All studies and sample storage are approved by the Ethics Committee of The Children’s Hospital and comply with the Privacy and Personal Information Act and the Health Information Act.
Managing the DNA Bank
The DNA Bank is managed by a governance group of professionals:
- Associate Professor David Winlaw (Head, Kids Heart Research and Cardiac Surgery, The Children’s Hospital at Westmead)
- Associate Professor Gary Sholler (Director, Adolph Basser Cardiac Institute, The Children’s Hospital at Westmead)
- Professor Richard Harvey (Developmental biologist, Victor Chang Cardiac Research Institute, Sydney)
- Dr Meredith Wilson (Head, Genetics, The Children’s Hospital at Westmead)
- Professor Bernadette Tobin (Ethicist, Plunkett Centre for Ethics, St Vincent’s Hospital, Sydney)
- Ms Gillian Blue (Genetic counsellor)
The governance group is responsible for protecting the interests and privacy of those participating, and for ensuring that the valuable resource of the DNA Bank is put to best use from a research perspective.
The group reports to the Ethics Committee of The Children’s Hospital at Westmead on an annual basis, or if advice is sought. The day-to-day issues and running of the DNA Bank are dealt with by the genetic counsellor, Ms Gillian Blue, with oversight by Associate Professor David Winlaw.
Contact us
If you would like to participate in our research, or would like some more information on the DNA Bank, please
email DNA Bank co-ordinator Gillian Blue or call on (02) 9845 2235.