Kids Heart Research DNA Bank
An initiative to help understand the cause of congenital heart disease.
What is Congenital Heart Disease?
One in 100 children are born with a heart condition and diagnosed with congenital heart disease (CHD). Congenital heart conditions include holes in the wall of the heart, abnormalities of heart valves and defects of vessels such as the aorta and pulmonary valve. CHD accounts for a high proportion of infants who require hospitalisation, surgery and treatment in an intensive care environment.
Why do we need a DNA Bank?
We do not know the cause of CHD. Research into the cause of CHD involves study of the genetic code, contained within DNA. Finding links between genes and heart disease requires DNA from a large numbers of patients. By collecting DNA we will be able to accelerate research into the causes and cure for CHD. Previous studies have shown a link between certain genetic changes and some forms of CHD. We are now working with several other groups in Australia and around the world to identify the changes in human genes and their relationship to CHD.
Who can participate in the study?
All people affected by CHD, their parents and in some cases their families are invited to participate. Affected individuals participating in the research are usually patients of ours and are recruited during their stay at the hospital. We also need the participation of unrelated people without CHD for comparative studies. If you would like to participate in the research, please contact Kids Heart Research on (02) 9845 2345 or e-mail us on kidsheart@chw.edu.au
What will the study involve?
If you are interested in participating, you will be contacted by a genetic counsellor or clinical researcher who will discuss the research with you. If you are happy with the research and agree to participate, a small sample of blood will be collected from you. We usually collect samples from children with CHD when they are asleep and under anaesthetic for their planned procedure. If you are a parent/family member of a child with CHD or an unrelated individual wanting to participate, an appropriate time and venue for blood collection will be arranged at your convenience. From this blood sample we will extract the DNA which contains the genetic code and store it for both current and future research into CHD.
Who will have access to my DNA?
The DNA and clinical information is stored in a confidential and secure database, accessible only to the manager of the DNA Bank. The information and DNA can only be used by the Children's Hospital investigators or their colleagues working in the area of CHD and child health. All samples have name and other identifying information removed and the samples are numbered to protect the privacy of your family and child. Laboratory workers are not able to 'see' the clinical information. All studies and sample storage are approved by the Ethics committee of the Children's Hospital at Westmead and comply with the Privacy & Personal Information Act, and the Health Information Privacy Act.
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This document was published on Tuesday, 14 August 2007
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