Childhood Cancer Research Program

The Childhood Cancer Research Program conducts and facilitates national and international research into the epidemiology and outcomes of childhood cancer.

Underpinning this work is CCQ’s management and support of the Australian Childhood Cancer Registry, a national clinical database of all cases of childhood cancer diagnosed in Australia.

Australian Childhood Cancer Registry

The Australian Childhood Cancer Registry is one of only a few national registries of childhood cancer in the world and the only Australian population-based registry specifically for childhood cancer. Information is collected with the support and assistance of all State and Territory Cancer Registries and all treating pediatric oncology hospitals throughout Australia. Funded and managed by CCQ, and with appropriate ethical and legislative approvals, the Registry records clinical and treatment information on each of the 750 to 800 children a year diagnosed with cancer in Australia.

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Keeping track of childhood cancer in Australia

Our continued investment into childhood cancer research plays a significant role in saving lives and beating childhood cancer. A range of information on childhood cancer incidence, survival and mortality has been produced using data collected by the Australian Childhood Cancer Registry and is freely available to anyone with an interest or involvement in childhood cancers at the following links.

Australian Childhood Cancer Statistics Online

Australian Childhood Cancer Statistics Online provides incidence, survival and mortality data by sex and age group for the most common cancers among children in Australia, along with information on trends in these measures over time. It was developed to enable free, easy and rapid access to data for anyone with an interest in childhood cancer, using the latest information available from the Australian Childhood Cancer Registry.

This project delivers a platform for increasing awareness of childhood cancer amongst government and the community. It also provides accurate information on the burden of childhood cancer, not available from any other source, and thus will be used to advise and underpin advocacy efforts for children with cancer. The data also have the potential to support and drive further research into the causes, prevention and cure for this rare but highly important disease.

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Childhood cancer staging for population registries

The collection of internationally consistent information on childhood cancer stage by population-based cancer registries is essential for epidemiologic analysis, international benchmarking and meaningful comparisons of childhood cancer incidence and outcomes. The Childhood Cancer Research Team has had a leading role in the development and testing of rules for the collection of childhood cancer stage by cancer registries. We provide here a manual containing detailed descriptions of the staging systems recommended in the Guidelines to assist population cancer registries to collect internationally consistent and comparable information on childhood cancer stage at diagnosis using available medical records.

This work was supported through a national initiative by Cancer Australia as part of an approach to improving national cancer data on stage, treatment and recurrence.

Late effects of childhood cancer

Survivors of childhood cancer are at high risk of adverse long-term health conditions, known as “late-effects” due to their cancer and its treatment. These include second cancers and a range of serious, chronic health conditions that carry significant morbidity and mortality.

Our researchers are working to develop a national data linkage platform for tracking and documenting late effects among childhood cancer survivors on a population basis and their association with specific treatments. Data linkage is a strong tool for studying survivor care. Linkage of the Australian Childhood Cancer Registry with population health and administrative datasets has the capacity to provide a comprehensive and effective approach to assessing health care utilisation and long-term health outcomes among childhood cancer survivors, ensuring the capture and follow-up of all Australian children diagnosed with cancer since 1983. These datasets include information on hospital stays, outpatient services, mental health, cancer screening, educational attainment, employment, fertility, and Medicare and Pharmaceutical Benefits Scheme data.