Posted in Research

We would like to congratulate Dr Gillian Blue from Kids Heart Research, Heart Centre for Children who was awarded the Rising Star Award at the 2021 Sydney Cardiovascular Symposium, for her outstanding contribution to Cardiovascular Research. The 2021 Symposium was dedicated to the innovative theme of cardiovascular remodelling and regeneration in research and clinical practice. This award recognises Gillian's work and research in understanding the genetic mechanisms underlying congenital heart disease. Gillian is a Postdoctoral Scientist and Genetic Counsellor at the Heart Centre for Children, based at The Children’s Hospital at Westmead. She is a Clinical Senior Lecturer at the Discipline of Genetic Medicine, The University of Sydney and a Visiting Scientist at the Victor Chang Cardiac Research Institute. Her primary research interest is understanding the genetic mechanisms underlying congenital heart disease using genomic technologies, as well as the associate...

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: fromtheheart@mcri.edu.au Click here to take a look at our latest study newsletter. Warmly,
Laura and the From the Heart study team ...

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...

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: http://www.fontanregistry.com/ If you would like to kn...

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...

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....

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.

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...

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 http://www.heartcentreforchildren.com.au/kids-heart-research.html. ...