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A lovely letter from a Heart Centre family

Aug 24 2017
The family of one of our patients has written a beautiful letter of appreciation. It shows how many people and various roles work together to ma...

24 Hour Soccerthon

Aug 23 2017
The annual 24 Hour Soccerthon, which is now in its 6th year, will be running from 25-26 August. Each year this event has helped us raise substan...

Team Harley - City2Surf 2017

Jun 27 2017
Mum Danielle puts it beautifully: "Why we started Team Harley: To raise awareness for Congenital Heart Disease in memory of our amazing...

Posted in Research

From the Heart Study: It's not too late to be part of this important study!

Posted by Nina Klug on 2 February 2017
From the Heart is an Australia and New Zealand Fontan Registry research study open to children, young people and adults with a Fontan circulation, and their parents and siblings. The study is focused on better understanding the health, wellbeing and experiences of people of all ages with a Fontan circulation, as well as the experiences of their parents, brothers and sisters.  The study is coordinated by Laura Mitchell at the Heart Centre for Children and the University of NSW in Sydney, in collaboration with the ANZ Fontan Registry and involves filling in one questionnaire at home. If you or your child are a part of the ANZ Fontan Registry and would like to know more about how to participate in this study, please contact Laura Mitchell on 1800 025 509 (free call from anywhere in Australia) or send an email to: Click here to take a look at our latest study newsletter. Warmly,
Laura and the From the Heart study team ...
Posted in: Research Doctors Work Patients  

Congenital Heart Health

Posted by Kylie Flament on 9 August 2016
National standards need to be developed for mental health care in congenital heart disease (CHD) to help address the significant emotional toll of diagnosis and treatment. In a perspective published in the latest issue of the Medical Journal of Australia A/Prof. Nadine Kasparian from the Heart Centre for Children at The Children's Hospital at Westmead outlines how the need for an integrated approach incorporating physical and mental health is crucial to 'congenital heart health'. CHD affects more than 2,400 babies in Australia each year. It is the leading cause of infant death and one of the leading causes of diseaserelated disability in children under five. Although advances in medicine have drastically improved the survival rate, they bring a range of new challenges including complex treatment choices and the need to transition from paediatric to adult cardiac services. Children with CHD and their families are also more vulnerable to ongoing physical and mental heal...
Posted in: Research  

Study launch: From the Heart

Posted by Nadine Kasparian on 10 February 2016
We are very pleased to announce the launch of our latest research study, "From the Heart". This study is looking into the health and well-being of children and adults with a Fontan circulation and their families. It is being coordinated by Laura Mitchell through the Heart Centre for Children in Sydney and The University of New South Wales, and is a collaboration with the ANZ Fontan Registry. Through "From the Heart" we are hoping to learn more about the individual experiences of people with a Fontan circulation, as well as the experiences of their parents and siblings. We believe it is really important to understand the experiences of everyone within the family, and it would be great to have as many people as possible   take part! If you or your child are not in the ANZ Fontan Registry but would like to be, or your contact details have changed, please contact us as soon as possible via: If you would like to kn...
Posted in: Research  

Fontan Education Day 2015

Posted by Manoj Kookkal on 18 August 2015
Patients, families and allied health workers are invited to attend the Fontan Education Day 2015 to hear up to date information and research related to the Fontan circulation and life experiences. The Education Day will include presentations from specialists in paediatric and adult congenital heart disease focused on a range of topics including; long-term care after the Fontan operation, support services and how to access them, research updates and future research goals. The sessions will provide an opportunity for audience questions and discussion, with aspects of the program focused on patient insights and concurrent break-out sessions. The Education Day builds on the work of the Australian and New Zealand Fontan Registry, HCC2686 0815 the world's largest database collecting health information on children and adults who have had a Fontan procedure. The Fontan Registry includes a team of specialists and researchers working closely together to ensure patients and their fa...
Posted in: Research Patients Other  

Looking for PhD students

Posted by Nadine Kasparian on 2 December 2013
Call for expressions of interest for PhD students who would like to research psychological aspects of paediatric heart disease. The Heart Centre for Children at the Children’s Hospital at Westmead, in collaboration with the Australia and New Zealand Fontan Registry and Sydney Children’s Hospital, is seeking Expressions of Interest from individuals interested in completing a PhD in childhood heart disease research, specifically in the areas of psychology and quality of life. The full-time PhD would begin in March 2014, and be completed within 3 years with the support of an expert multidisciplinary team. EOI's should highlight the academic and/or clinical quality of the applicant and need not be accompanied by a project plan. However, if the applicant would like to suggest a particular project that is aimed at extending or translating evidence-based care for infants, children and young people diagnosed with heart disease and their families, this is also invited....
Posted in: Research  

In Memory of Madi

Posted by Kylie Flament on 28 November 2013
Rachel and Mathew lost their 10-year-old daughter Madi to heart disease in 2011 and miss her every day, but they are turning a tragedy into a drive to prevent other families from experiencing the same loss through raising money for research.  The Heart Centre for Children is working hard to understand Congenital Heart Disease (CHD), the causes of it, different treatment options and how to support families in their journey.  To find out more about Madi and her family's fundraising quest, and to donate, head to In Memory of Madi.  For more about our research programme, visit Kids Heart Research.
Posted in: Research Fundraisers How you can help  

Fontan for Life

Posted on 26 November 2013
Fontan for Life
William was just 38 hours old when he underwent his first heart surgery.  In his short life he has undergone three heart surgeries at the Heart Centre for Children – culminating in the Fontan procedure which he had last year. Now, at six years of age, his mother Lisa Chamberlin says he is a completely different child, who is active and loves to run around with his brother. William is one of over 900 children and adults who are taking part in the largest heart study of its kind in the world, the Fontan Registry and who, this month is hoping to raise awareness of the registry during a campaign called ‘Fontan for Life’ which aims to raise $200,000 for the registry. The Fontan procedure is a lifesaving medical technique used to treat children born with certain serious heart defects. The procedure involves restructuring the heart so that it can operate effectively using only one ventricle, or pumping chamber, as opposed to two. The Fontan procedure is relative...
Posted in: Research Fundraisers How you can help Media Patients  

Cardiomyopathy research published

Posted by Kylie Flament on 7 November 2013

Two of our cardiologists, Dr Christian Turner and A/Prof Gary Sholler, were involved in a national study of cardiomyopathy that was published last week in Circulation.  The study found that after the first year following diagnosis, the majority of patients are well and do not need to take medication. 

The paper is entitled 'Long-term outcomes of dilated cardiomyopathy diagnosed during childhood: results from a national population-based study of childhood cardiomyopathy.'

To read the abstract or the full article, click here.

Posted in: Research Doctors Work  

NHMRC Grants announced

Posted by Kylie Flament on 30 October 2013
The good news continued this week with the announcement that two research projects that Heart Centre staff are involved in have secured funding from the National Health and Medical Research Council.  The projects are: Improving functional outcomes after Fontan surgery by a cross-sectional study of the outcomes following variation in practice in Australia and New Zealand: focus on anticoagulation and cardiac shunting by the fenestration & Clinical, Genetic and Psychosocial Aspects of Sudden Cardiac Death The competition for these highly-prestigious grants is intense, so we are very proud of A/Prof David Winlaw, Dr Julian Ayer, Dr Nadine Kasparian and everyone else involved. For more information about our research teams and the work that they do, go to ...
Posted in: Awards Research  

Genetics study

Posted by Gillian Blue on 27 May 2013

A/Prof David Winlaw and I recently participated in a study which has been published in the highly acclaimed journal, Nature Genetics. The study identified a region on chromosome 4p16 that is associated with a risk of developing ostium secundum atrial septal defects (ASD). Variations in this region are estimated to account for 9% of the population-attributable risk of ASD.

Click here to read more about the study.

Posted in: Research Media  
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