CoHD Research

Siblings – Can you help us design a new research study?

This study will provide the first vital insights into what the hospital visiting experience is like for families: the siblings, their parents or guardians, their extended family members, and the healthcare staff who work with them in the PICU. Findings will help researchers begin to identify how siblings and families can be better supported. In addition, the findings will help to inform the co-development of an evidence-based resource to support sibling inclusion and family togetherness in the PICU, which will eventually have significant implications for supporting HeartKids families during an PICU admission.

Details:

• Lead Researcher: Dr. Ashleigh E Butler, La Trobe University
• Location: Victoria. Meeting in person or via Zoom.
• Participation Request: Children and young people (aged 5 -18 years) who have visited a brother or sister in PICU in the last 5 years. Primarily researchers would like to connect with siblings in Victoria to work with them in person but could also work via zoom or email with interested siblings from around Australia.

To register your interest in participating, email Ashleigh at A.Butler@Latrobe.edu.au

Transition Compass: A co-design study

The transition from paediatric to adult care can be difficult to navigate, especially given the siloed and fragmented healthcare system in Australia. This study is conducting a series of codesign workshops held with adolescents and young adults (AYAs), parents, paediatric healthcare professionals and adult healthcare professionals to better understand what can be done better in this space. The purpose of this project is to understand the preferences, perspectives, and lived experience, of those who have experienced health care transition, with the aim of informing a future transition intervention.

Details:

• Lead Researcher: Dr. Jordana McLoone, UNSW Sydney
• Location: NSW, VIC, SA
• Participation Request: Teenagers, young adults and families in NSW, VIC, and SA who are currently managing transitions to adult healthcare.

To register your interest in participating, email Jordana at j.mcloone@unsw.edu.au

10,000 Steps website and app focus group

This initiative is aimed at enhancing the 10,000 Steps website and app for children and families. Families and individuals are invited to participate in a series of focus groups to share your feedback on how the 10,000 Steps website and app can be improved. This collaboration will identify necessary adjustments to make digital platforms more engaging and supportive for families striving to be more active.

The researchers are particularly looking for families who feel they aren’t quite meeting their physical activity goals—whether it’s the parents, children, or both. Your insights are crucial in developing ways to make the 10,000 Steps program more accessible and enjoyable for families like yours.

Details:

• Lead Researcher: Dr. Stephanie Schoeppe, Central Queensland University
• Location: QLD
• Participation Request: Queensland families and individuals impacted by CoHD to participate in a focus group study.

Click here to register your interest to participate.

Precision medicine in CHD: genetic variants guiding post-operative clinical management

Principle Investigator: Professor David Winlaw

Project Institution: The University of Sydney

Neonatal cardiac surgery for transposition of the great arteries (TGA) is a success story, with most babies now surviving well into adulthood with a ‘normal’ circulation. Outstanding concerns are early post-operative cardiac dysfunction and other serious complications requiring prolonged intensive care in up to a third of patients. The aim is to use patient genotype to target therapy and achieve better outcomes. The project will identify individual variation in genes associated with the development of low cardiac output, and length of intensive care stay, that will form the basis of a personalised approach to post-operative care.

Development in 8/9 Year Old Children After Major Cardiac And Non-Cardiac Surgery

Principle Investigator: Associate Professor Karen Walker.

Project Institution: Grace Centre For Newborn Intensive Care Westmead Children’s Hospital, Sydney

This study tests the novel ‘first in human’ heart treatment with placental cord blood cells in 12 babies with hypoplastic left heart syndrome (HLHS), during the first of three surgical operations (at day three of life). The strategy is to stimulate heart muscle growth as early as possible, and strengthen heart function to avoid the high incidence of heart failure and death that occurs before the second operation at three months. Demonstrating the safety of this new therapy will facilitate larger multicentre clinical studies to determine improvements to immediate and long term post-operative recovery, with fewer life-threatening complications.

Royal Children’s Hospital Cardiac Specimen Collection Cataloguing and Re-classification

Principle Investigator: Dr Bryn Jones

Project Institution: Royal Children’s Hospital, Melbourne

Project Description: The use of heart specimens for teaching paediatric cardiology and cardiac surgical trainees is well established, and widely regarded as an essential component of education and training. The cardiac specimen collection at RCH has been accumulated over more than fifty years. Cataloguing and classification will ensure the specimens are properly preserved as an invaluable resource for research into, and the teaching of the pathology of congenital heart defects.

Cord Blood Cell Therapy for Babies With Hypoplastic Left Heart Syndrome

Principle Investigator: A/Prof Salvatore Pepe

Project Institution: Murdoch Children’s Research Institute

This study tests the novel ‘first in human’ heart treatment with placental cord blood cells in 12 babies with hypoplastic left heart syndrome (HLHS), during the first of three surgical operations (at day three of life). The strategy is to stimulate heart muscle growth as early as possible, and strengthen heart function to avoid the high incidence of heart failure and death that occurs before the second operation at three months. Demonstrating the safety of this new therapy will facilitate larger multicentre clinical studies to determine improvements to immediate and long term post-operative recovery, with fewer life-threatening complications.

Identifying the Underlying Genetic Cause of Inherited Arrhythmia Syndromes In Early Childhood

Principle Investigator: Dr Jodie Ingles

Project Institution: Centenary Institute, Sydney

Heart disease in children results in significant symptoms and can ultimately lead to arrhythmias and premature death. One form of heart disease in children relates to abnormalities in the electrical activity of the heart, many of which are inherited. Inherited arrhythmia syndromes can be difficult to diagnose on standard clinical tests, making clinical screening of family members challenging. Better understanding of the genetics may be useful in predicting clinical outcomes of affected children, but most importantly, can more accurately determine risk to other family members. The proposed study will use the latest genetic technologies to identify the genetic causes and to use these results in clinical care.

Establishing the Queensland Paediatric Cardiac Service CHD LIFE program database

Principle Investigator: Associate Professor Robert Justo

Project Institution: Lady Cilento Children’s Hospital, Brisbane

Children with Congenital Heart Disease (CHD) are surviving into adulthood with little known about their development over time. Each year over 100 Queensland children undergo open heart surgery before 12 months of age, placing them at risk of poorer developmental outcomes. The CHD LIFE (Long term Improvement in Functional hEalth) Program provides targeted developmental services, and developed a state-wide model of care to meet the developmental needs of these children. The project will establish a centralised database to support long-term follow up and research activity, measure state-wide model success, and inform local and international registries.

Investigating Neural Correlates of Outcome in Fontan Patients Using Advanced MRI Techniques

Principle Investigator: Associate Professor Mark McKay

Project Institution: Royal Children’s Hospital, Melbourne

Children with complex heart defects are at increased risk of physical, learning and behavioural problems. This project will assess the use of advanced MRI brain imaging techniques to investigate brain structure and function, in people with a single ventricle chamber, palliated with a Fontan operation. It will assess volumes of different brain structures, and the microstructural organisation of white matter fibre tracts, which are the brain’s information highways. Subjects with better outcomes will be compared to those with worse outcomes. Understanding of imaging contributors to outcomes may help develop ways to optimise management strategies, including the timing and type of surgery