HeartKids Australia announced the research projects to be funded under the Grants-in-Aid program in 2014. The Grants-in-Aid program supports research projects and research capacity building in congenital and acquired childhood heart disease.
HeartKids Australia would like to thank Wilson HTM Foundation (the Founding Partner of this program), HCF Health Insurance ( Founding Partner of HeartKids Australia), Kiwanis Australia, HeartKids Queensland, HeartKids Victoria and HeartKids New South Wales for their support.
The seven research projects funded in 2014 are as follows:
Principal Investigator: Dr Julian Ayer
Project: Improving exercise capacity in children with a Fontan circulation after the extracardiac conduit.
Institution: The Heart Centre for Children, The Children’s Hospital at Westmead and the University of Sydney.
Additional Investigators: Prof David Winlaw, Prof Hiran Selvadurai, Dr Rajesh Puranik, A/Prof Gary Sholler, Dr Phillip Roberts and A/Prof Yves d’Udekem.
Some children with complex congenital heart disease are born with one instead of two pumping chambers (ventricle). These children undergo a series of operations, allowing blood which is low in oxygen to “passively” drain to the lungs and the single ventricle to pump blood to the body (total cavopulmonary connection). These children have a substantially reduced ability to exercise. The mechanisms for impaired exercise capacity and the strategies for improving it are not well understood. We aim to perform studies which examine the mechanisms for reduced exercise capacity and potential strategies for improving it.
Principal Investigator: Ms Miranda Campbell *
Project: Investigating the need for neurodevelopmental follow-up for infants undergoing open heart surgery.
Institution: Queensland Paediatric Cardiac Service, Mater Children’s Hospital.
Additional Investigators: Ms Rachel Thomas.
The Queensland Paediatric Cardiac Service has established a neurodevelopmental follow-up clinic to provide multidisciplinary follow-up for children with congenital heart disease. The follow-up clinic is currently limited to three diagnostic groups: transposition of greater arteries; hypoplastic left heart syndrome; and, post extracorporeal life support (ECLS) treatment. This project will screen all infants under 12 months who undergo open heart surgery; pre-surgically, at 24-hours post discharge from intenstive care and before discharge from hospital. The scores will be used to compare the risk of poor developmental outcomes in infants as a function of follow-up clinic status.
Principal Investigator: Professor Michael Davies
Project: Exposures during human embryo development and the risk of congenital heart defects.
Institution: The Robinson Institute, The University of Adelaide.
We have recently established that there is an excess of heart defects in children born after infertility treatment. We now have the unique opportunity to undertake a retrospective analysis of conditions during embryo development that contributed to adverse outcomes for these individuals. Factors will include maternal pre-conception disease, medications prior to and during pregnancy with a focus on ovulation drugs, embryo quality and growth, and semen parameters. The results will have implications for infertility treatment, medication use, patient choice in the infertile population, and will identify candidate factors for investigation in the general population.
Principal Investigator: Professor Alun Jackson *
Project: Family coping with child heart disease.
Institution: Heart Research Centre The Robinson Institute, Royal Melbourne Hospital.
Additional Investigators: A/Prof Erica Frydenberg and Dr Barbara Murphy.
Childhood heart disease (CHD) can place families under strain as they adjust to the circumstances of their child’s condition and strive to cope with the impact of these changed circumstances on the family as a whole and on family members in their various roles as parents and siblings. Starting from the framework of a tested parenting model, the Parents can do Coping program, this project will explore family coping with CHD and identify the specific needs of these families that could be met through an adaptation of the program.
Principal Investigator: A/Prof Brigid Jordan *
Project: Infant and Family Well-being after Cardiac Surgery: The Role of Psychosocial Support.
Institution: Murdoch Children’s Research Institute, Melbourne.
Additional Investigators: A/Prof Michael Cheung, Prof Vicki Anderson and Dr Candice Franich-Ray.
Children who have cardiac surgery and their familes experience significant separation, trauma and stress and are at high risk of emotional, behavioural and family relationship difficulties which have negative consequences later in life. Our research will explore the mechanisms contribuing to negative outcomes and document the availability and use of formal and informal psychosocial supports by parents. Our secondary aim is to determine what predicts parent and child social-emotional well-being. The critical information will allow us to target psychosocial care for infants and families and guide effective interventions to improve the quality of life and outcomes for these children.
Principal Investigator: Dr Nadine Kasparian
Project: Biomarkers of parental stress after fetal diagnosis of complex congenital heart disease.
Institution: The Heart Centre for Children, The Children’s Hospital at Westmead and the University of NSW.
Additional Investigators: Prof Marie-Paule Austin, Prof Vivette Glover, A/Prof Gary Sholler, A/Prof David Winlaw, A/Prof Edwin Kirk, Prof Bryanne Barnett, Ms Dianne Swinsburg, Prof Nadia Badawi, Dr Kerry-Ann Grant, Dr Karen Walker, Professor Adrian Bauman and Ms Karen Sherlock.
Parents and families experience high stress and anxiety after receiving a diagnosis of complex congenital heart disease (CHD) in their baby. Very little is known about how the timing of this diagnosis affects parents physically and emotionally, and how this may affect their baby’s growth and development. This study will be the first to examine the ways in which mothers and fathers respond physically to the stress associated with a diagnosis of complex CHD during pregnancy. This will be achieved by examining the role of salivary cortisol as an indicator of stress in parents during pregnancy.
Principal Investigator: Professor Chris Semsarian
Project: Genetic testing in children at risk of heart disease.
Institution: Centenary Institute.
Additional Investigators: Dr Jodie Ingles.
Genetic heart disease includes inherited cardiomyopathies (heart muscle diseases) and primary heart rhythm disorders. If a disease-causing gene fault is identified in a family, then this information can be used in other family members, especially children, to test for the gene fault, known as predictive genetic testing. No guidelines exist regarding genetic testing or inherited heart diseases in children. Our clinic experience suggests that genetic testing can be a very useful tool in early identification of gene carriers amongst children and have minimal emotional impact. The proposed study will answer many unresolved questions about the impact of predictive genetic testing in children, how early diagnosis in children can allow for initiation of early prevention strategies, and provide a basis for the development of guidelines that will standardise genetic testing approaches in children across Australia at risk of heart disease.
* Funded by HCF Health Insurance