Global data rules: Kids with cancer set to benefit

For the first time ever, international childhood cancer experts have developed registry guidelines for collecting data on the stage of cancer at diagnosis among children.

Australian researchers played a leading role in development of the guidelines, which will help to improve outcomes for children affected by the disease.

The guidelines, published this week in The Lancet Oncology, cover 16 major childhood cancers and allow better interpretation and direct comparison of childhood cancer survival outcomes between countries.

Cancer Council Queensland spokesperson Katie Clift said CCQ’s Head of Research Professor Joanne Aitken was the only Australian representative involved in the development of the recommendations.

“These guidelines will give us the ability to examine inequalities in outcomes, and track improvements in the early detection of childhood cancer over time – for the first time ever globally,” Ms Clift said.

“Data on cancer stage helps us to understand the reasons for changes in cancer incidence and outcomes, and helps point to areas of greatest need.

“Most childhood malignant diseases are staged according to disease-specific staging systems that often differ between countries or clinical trial organisations.

“Wide adoption of our guidelines globally, including in low-income countries, will enable international comparative incidence and outcome studies, benefitting children affected by cancer around the world.”

The guidelines specify the childhood cancer staging systems used in cancer registries should be simple, yet as informative as possible, and reflect the extent of the disease.

Registries should collect stage for paediatric cancer according to internationally endorsed classification systems, and collect disease stage data routinely.

As a next step, the new childhood cancer staging guidelines will be tested for the first time in the world by Cancer Council Queensland through the Australian Paediatric Cancer Registry as part of a national initiative by Cancer Australia to improve cancer staging data for all Australian patients.

Cancer remains the most common cause of disease-related death among children aged 1-14 in Australia.

More than 640 Australian children are diagnosed with cancer each year, and almost half of all cases are diagnosed in children under four years of age.

More information about Cancer Council Queensland is available via 13 11 20 or

For more information or interviews, please contact:
Katie Clift,
Executive Manager,
Media and Spokesperson,
Cancer Council Queensland
Phone: (07) 3634 5372
Mobile: 0409 001 171