Life and health After Childhood cancEr (LACE): A national data linkage project

The number of children in Australia who survive cancer is increasing because more cases are being diagnosed and treatments are improving.

Childhood cancer survivors face two major challenges: the effects of cancer and its harsh treatments. This happens at a time when their bodies are still growing. This can result in long-term physical and emotional impacts. These lasting effects, called ‘late effects,’ can be more serious than the short-term problems experienced during treatment.

Right now, there is no way to access national information in Australia about the long-term health effects and healthcare needs of childhood cancer survivors. This information is important for creating new solutions that reduce the risk and severity of treatment-related health problems and improve quality of life. The Life and health After Childhood cancer (LACE) Project will, for the first time, study these outcomes across the population. It will identify how often late effects occur and how serious they are as a result of cancer and its treatment. To do this, the project will link data from the Australian Childhood Cancer Registry—one of the most detailed and longest-running childhood cancer databases in the world—with real-world health and government records to create a national research resource.

Using the LACE data resource, the research team studies how childhood cancer and its treatment can lead to short-term and long-term health problems, as well as other issues that affect quality of life. The study will look at many outcomes but will focus on areas where little evidence exists or where results could help shape Australian health policies. This includes how survivors use health services and patterns in fertility, pregnancy, and parenthood.

The LACE Project is a five-year project (2024-2029) funded by the Medical Research Future Fund National Critical Research Infrastructure scheme, with preliminary funding provided by Cancer Australia.

Facts at a glance

There is currently no way to access national information in Australia about the full range of long-term health effects and healthcare use after childhood cancer.
The LACE Project is a national data linkage study that connects health and education records for Australian children diagnosed with cancer, along with 2 comparison groups: their siblings and a group from the general population.
This data resource makes it possible, for the first time, to track childhood cancer survivors over time and study short-term and long-term health problems, as well as other factors that affect quality of life after cancer and its treatment.

Aims

The LACE Project aims to better understand the long-term health effects of Australian childhood cancer survivors. This knowledge will help create health policies and new care models that improve outcomes for this growing group and ensure resources go where they are most needed.

Objectives

The objectives are:

Build a national research resource by linking data from different states and territories in a large population-based project
Use this data to answer important questions, such as:
- How often do childhood cancer survivors experience long-term effects, and how does this compare to children who never had cancer?
- How do factors like cancer treatment type and social or economic background affect the risk of these long-term effects?
- What health services and follow-up care help lower these risks and reduce healthcare costs?
Create broader impact by facilitating access to the analysed data to answer clinical, policy, and consumer questions that have not been addressed.

Methods

The LACE Project is a large research study that links data from the Australian Childhood Cancer Registry with health and education records from across Australia. This helps us track long-term outcomes for childhood cancer survivors.

Our study includes:

All Australian children aged 0–14 who were diagnosed with cancer between 1983 and 2021.
Two comparison groups:
- Siblings of cancer survivors
- Population controls – a random sample of children matched by age, sex, and where they live.

The LACE Research Data Resource combines information from the Australian Childhood Cancer Registry with health and administrative data from the Australian Government and all eight states and territories. All data in the LACE Research Data Resource is de-identified to protect privacy. This linked collection makes it possible to study outcomes for childhood cancer survivors across Australia.

The LACE Project is an ethics-approved research study.

Partners

Cancer Council Queensland
University of the Sunshine Coast
University of New South Wales
University of Sydney
Royal Children's Hospital

Cancer Council Queensland logo University of the Sunshine Coast logo The University of New South Wales logo

Statement of Compliance – Data linkage

This project will be conducted in compliance with the ethically approved protocol, the conditions of the ethics committee and data custodian approvals, the NHMRC National Statement on Ethical Conduct in Human Research (2025), the Australian Code for the Responsible Conduct of Research, 2018 (the 2018 Code) and all applicable principles and legislations.

Ethics approval and waiver of consent was granted by the NSW Population and Health Services Research Ethics Committee (PHSREC) (2020/ETH02915 / 2020.87), the ACT Human Research Ethics Committee (ACT HREC) (#2022.STE.00153), the Human Research Ethics Committee of the Northern Territory (NT HREC) (#2023-4740), the Royal Children’s Hospital Melbourne Human Research Ethics Committee (RCH HREC) (#HREC/86017/RCHM-2023), the University of Tasmania Human Research Ethics Committee (TAS HREC) (#30221), the Department of Health WA Human Research Ethics Committee (WA HREC) (#RGS0000006307), and the Australian Institute of Health and Welfare Ethics Committee (EO2022/3/1149).

Chief investigators

Professor Jason Pole
Professor Natasha Nassar
Professor Peter Baade
Professor Natalie Bradford
Dr Katharina Merollini
Dr Eden Robertson
Ms Anne Kay
Ms Jodie Pappas
Professor Nicholas Gottardo
Professor Richard Cohn
Dr Christina Signorelli
A/Professor Thomas Walwyn
Professor Jordan Hansford
Dr Maria Kirby
Professor David Eisenstat

Research team

Dr Heather Baldwin
Anne Currell
Laura Newey
Dr Hai Pham
Sarah Pont
Jessica Tone

To ensure that research questions are focussed on what matters most to those impacted by childhood cancer, we will engage with clinical and consumer stakeholders throughout the project.

Collaborate with us

The LACE Research Team invites collaboration from survivors, clinicians, policy makers, and researchers to utilise the LACE Data Resource to improve understanding of the late-term effects of childhood cancer and help shape better care, policies, and support for survivors.

External parties may request a specific set of analysed results which if approved, will be provided in aggregated form. No raw data will be shared for external analyses; all analyses will be conducted by a member of the LACE team who has ethics approval. The request for analyses must be for a project that aligns with the scope and objectives of the LACE project. All such projects including the dissemination of results must involve collaboration with, and support from, members of the LACE Chief Investigator Team.

Researchers who would like to collaborate should submit a Collaboration request form to the LACE Chief Investigator Team for consideration.

Alternatively, you can access a downloadable version of the Collaboration request form (DOCX, 88.6 KB).

Baldwin HJ, Pont S, Currell A, Newey L, Youlden DR, Bradford N, Baade PD, Aitken JF, Pole JD, Nassar N. Data resource profile: The Life and health After Childhood cancEr (LACE) project. Int J Popul Data Sci. 2026 Feb 2;8(6):2988. doi: 10.23889/ijpds.v8i6.2988. https://ijpds.org/article/view/2988