Date: January 2024
AEDC Cycle: Cycle 1 (2009), Cycle 2 (2012), Cycle 3 (2015), Cycle 4 (2018), Cycle 5 (2021)
States: SA
Data Linkage Project: Yes
Organisation: University of Adelaide
In Australia, congenital heart disease (CHD) occurs in around 8 per 1,000 live births. Children with CHD appear to have multiple developmental deficits. This is possibly because the circulatory system has not functioned optimally during fetal life, depriving the brain of blood and oxygen. The extent and nature of deficits is unclear because, to date, most studies have focussed on children who required surgery in the first year of life, comprising a third of those born with CHD. Until recently, it was thought that children with CHD who did not require surgery would not have compromised development, but this view has now been challenged. Few studies have followed children beyond pre-school years, and it is possible that the prevalence of neurodevelopmental problems in children with CHD increases over time. This project therefore plan to investigate educational outcomes in children with CHD. It will investigate outcomes following critical (i.e. requiring surgery) and non-critical CHD as well as CHD accompanied by other defects or as part of a syndrome.
Date: January 2024
AEDC Cycle: Cycle 1 (2009), Cycle 2 (2012), Cycle 3 (2015), Cycle 4 (2018)
States: NSW
Data Linkage Project: Yes
Organisation: Children’s Hospital at Westmead Clinical School, University of Sydney
Over the past 60 years, advances in surgery and treatment have translated into greater survival rates (up to 4.5 times) for infants with Congenital Heart Disease (CHD) in the first year of life, with the greatest gains achieved among those with complex CHD. However, the impact of this disease can persist with patients having an altered life trajectory. Identifying children with CHD and tracking their pathways of care and health outcomes is imperative to optimise treatment, identify critical stages for intervention and inform health service planning.
Recently a National Strategic Action Plan for Childhood Heart Disease was devised to reduce the impact of CHD in Australia and achieve the goal that people with CHD live longer. The Action Plan identified needs in clinical and research areas. It highlighted research priorities including: identify the burden of neurodevelopmental, psychosocial, poor mental health and economic factors on patients with CHD in order to improve the quality of life of CHD patients and their families; identify the health factors that impact CHD pre- and post-natally to inform evidence base and transform care; and understand Australian-relevant epidemiology to determine effective interventions.
This project aims to examine the health service utilisation, costs, ongoing health, neurodevelopmental and cognitive outcomes for children with a diagnosis of CHD. Children with CHD will be identified in the Kids Heart Biobank and hospital discharge data and outcome data concerning health (hospitalisation, procedures, Medicare, PBS), early child development, school test (NAPLAN) and survival of individuals with CHD will be identified from administrative datasets.
Recently a National Strategic Action Plan for Childhood Heart Disease was devised to reduce the impact of CHD in Australia and achieve the goal that people with CHD live longer. The Action Plan identified needs in clinical and research areas. It highlighted research priorities including: identify the burden of neurodevelopmental, psychosocial, poor mental health and economic factors on patients with CHD in order to improve the quality of life of CHD patients and their families; identify the health factors that impact CHD pre- and post-natally to inform evidence base and transform care; and understand Australian-relevant epidemiology to determine effective interventions.
This project aims to examine the health service utilisation, costs, ongoing health, neurodevelopmental and cognitive outcomes for children with a diagnosis of CHD. Children with CHD will be identified in the Kids Heart Biobank and hospital discharge data and outcome data concerning health (hospitalisation, procedures, Medicare, PBS), early child development, school test (NAPLAN) and survival of individuals with CHD will be identified from administrative datasets.
Date: January 2024
AEDC Cycle: Cycle 1 (2009), Cycle 2 (2012), Cycle 3 (2015), Cycle 4 (2018)
States: QLD
Data Linkage Project: Yes
Organisation: The University of Queensland
This project aims to evaluate comprehensively long-term outcomes of neonates and children who suffered critical illness, using mortality post discharge, school-age educational performance, health system utilisation, and cost estimates. ANZPICR data will be linked with Queensland Hospital Admitted Patient Data Collection (QHAPDC), Queensland Perinatal Data Collection, Registrar General deaths, QLD Emergency Department data, Department of Education databases (Educational attainment AEDC and NAPLAN), notifiable conditions surveillance and vaccination encounter data.
In view of the very low mortality in Paediatric ICU (PICU), the lack of long term data on the impact of critical illness in children represents a major knowledge gap. Better data are required to identify groups at highest risks and those most likely to benefit from protective interventions in order to achieve the substantial improvements in PICU outcomes over the next decade. It is anticipated that this study will demonstrate the usefulness of linkage of ANZICS PICU registry data to these other sources and is likely to be a precursor to further studies at state-wide and national level.
In view of the very low mortality in Paediatric ICU (PICU), the lack of long term data on the impact of critical illness in children represents a major knowledge gap. Better data are required to identify groups at highest risks and those most likely to benefit from protective interventions in order to achieve the substantial improvements in PICU outcomes over the next decade. It is anticipated that this study will demonstrate the usefulness of linkage of ANZICS PICU registry data to these other sources and is likely to be a precursor to further studies at state-wide and national level.
Date: January 2024
AEDC Cycle: Cycle 1 (2009), Cycle 2 (2012), Cycle 3 (2015), Cycle 4 (2018)
States: ACT
Data Linkage Project: Yes
Theme(s): Geographic area specific research
Organisation: National Centre for Epidemiology and Population Health, Australian National University
This data linkage study is one component of The Per- and Poly-Fluoroalkyl Substances (PFAS) Health Study: Phase II, which is investigating the exposure to and potential health effects of PFAS in areas of known contamination in the communities of Williamtown in New South Wales, Oakey in Queensland and Katherine in the Northern Territory, Australia.
The primary goal of the data linkage study is to examine whether adverse health outcomes potentially associated with PFAS exposure are more common among people who have lived in the PFAS Investigation and Management Areas of Williamtown, Oakey and Katherine (exposed), than among people who have lived outside these areas (non-exposed), after accounting for sociodemographic characteristics.
The primary goal of the data linkage study is to examine whether adverse health outcomes potentially associated with PFAS exposure are more common among people who have lived in the PFAS Investigation and Management Areas of Williamtown, Oakey and Katherine (exposed), than among people who have lived outside these areas (non-exposed), after accounting for sociodemographic characteristics.
Date: January 2024
AEDC Cycle: Cycle 1 (2009), Cycle 2 (2012), Cycle 3 (2015), Cycle 4 (2018)
States: SA
Data Linkage Project: Yes
Organisation: Cancer Council SA
Early childhood represents a critical development period, during which exposure to adverse biological or environmental influences may have significant consequences for one’s lifespan. Research has demonstrated that cancer in early childhood is a significant risk factor for development. Despite what is known about developmental consequences of childhood cancer, little research is based on whole-population data, particularly within an Australian context.
This study aims to address this dearth in research by utilising longitudinal population-based linked data to investigate developmental outcomes of early childhood cancer survivors in their first year of school. Specifically, it will investigate cognitive, physical, and emotional developmental outcomes in South Australian (SA) early childhood cancer survivors aged 2 – 9 years.
The objectives are to:
1. Describe the population of childhood cancer survivors in terms of cancer information, demographics and other characteristics.
2. Compare developmental outcomes between childhood cancer survivors and matched controls.
3. Determine differences in developmental outcomes among childhood cancer survivors in terms of cancer data and demographic characteristics.
This study aims to address this dearth in research by utilising longitudinal population-based linked data to investigate developmental outcomes of early childhood cancer survivors in their first year of school. Specifically, it will investigate cognitive, physical, and emotional developmental outcomes in South Australian (SA) early childhood cancer survivors aged 2 – 9 years.
The objectives are to:
1. Describe the population of childhood cancer survivors in terms of cancer information, demographics and other characteristics.
2. Compare developmental outcomes between childhood cancer survivors and matched controls.
3. Determine differences in developmental outcomes among childhood cancer survivors in terms of cancer data and demographic characteristics.
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