Better follow-up care for the thousands of Australian children who s
urvive cancer is the aim of a new $5.4million study under the leadership of the University of Queensland (UQ).
A national team of researchers will work to develop a composite picture of young people impacted by cancer by developing a powerful new data platform of childhood cancer survivors.
Increasing incidence of childhood cancer combined with improvements in survival (approximately 85% of children survive for at least five years) has led to a growing population of childhood cancer survivors.
But the estimated17,500 Australian childhood survivors diagnosed since 1983 face dual challenges of the effects of cancer and receiving toxic treatments at a time when their bodies are developing, combined with potentially living with the consequences of those life-saving treatments for decades.
Professor Jason Pole, Deputy Director of Research at UQ’s Queensland Digital Health Centre (pictured), said for many years the focus has been on “the cure”, without necessarily considering the psychosocial and long-term health effects of cancer treatment.
“These ‘late-effects’ can potentially be more significant than the acute complications experienced during curative treatment.
“Our research will address these unmet health and research infrastructure needs by creating a national population-based data platform of childhood cancer survivors that will track survivors longitudinally,” he said.
The Life and Health after Childhood Cancer (LACE) project has been awarded $3million in funding by the Medical Research Future Fund. In addition, research partners are contributing in-kind support valued at $2.4million.
“LACE will allow us to evaluate the evidence for follow-up care related to late effects of childhood cancer using sophisticated data linkages,” Professor Pole said.
The research team includes academics and researchers from UQ, Cancer Council Queensland, University of Sydney, University of the Sunshine Coast, Australian & New Zealand Children’s Haematology/Oncology Group (ANZCHOG), Redkite, University of Western Australia, University of New South Wales, University of Tasmania, University of Adelaide, South Australia Health and Medical Research Institute, Murdoch Children's Research Institute, and key consumer investigators.
LACE will enable families, health professionals, researchers and policy-makers access to population-based data on the late-effects (risk, incidence, severity, cost implications) from childhood cancer.
Over five years, the research team will develop the critical research infrastructure and data intelligence required to identify and monitor unmet needs in childhood cancer survivors.
“Through an enhanced national population-based data linkage strategy, this project will expand the Australian Childhood Cancer Registry – Australia’s dedicated childhood cancer registry and one of the most comprehensive paediatric clinical cancer registries in the world – to further augment this valuable resource,” Professor Pole said.
The team will leverage extensive project management support through the Queensland Digital Health Centre and Cancer Council Queensland (CCQ), which funds and manages the Australian Childhood Cancer Registry (ACCR).
