Abstract
INTRODUCTION: In Australia, around 85% of children survive childhood cancer. Yet, up to 80% of survivors experience subsequent adverse health conditions called late effects, largely attributed to cancer treatment. The LACE study is a population-based linked data resource that aims to facilitate the investigation of childhood cancer and its treatment and the impact on late effects for childhood cancer survivors. METHODS: The study links the Australian Childhood Cancer Registry to administrative cross-jurisdictional health and education data to enable ongoing follow-up of outcomes for childhood cancer survivors. The study population includes all Australian children aged less than 15 years, diagnosed with cancer 1983-2021, and comparison groups comprising siblings of childhood cancer patients and a random sample of children from the general population frequency matched by age, sex and residential location to cases. RESULTS: To date, the case cohort includes 25,226 children diagnosed with cancer, with longest follow-up to the age of 53 years. The most commonly diagnosed childhood cancers were leukaemia and related cancers (n=8182, 32.4%), followed by central nervous system and related cancers (n=5850, 23.2%), and lymphomas and reticuloendothelial neoplasms (n=2568, 10.2%). Overall, 16,314 (64.7%) children underwent chemotherapy, 5555 (22.0%) received radiotherapy and 7300 (28.9%) had surgical treatment for their cancer, with immunotherapy use reported for 641 (2.5%), hormonal therapy for 4549 (18.0%) and ancillary therapies for 2581 (10.2%). A total of 19,321 (76.6%) cases were alive at the end of the study. CONCLUSION: This new comprehensive national data linkage resource represents a valuable asset that will facilitate research to identify the risk of late effects and effective follow-up care to inform counselling patients and their families, as well as guidelines, models of care and personalised follow-up care plans. Further, it will enable identification of inequities in healthcare access and outcomes across population sub-groups.