Victorian Childhood Cancer Outcomes Registry (VCCOR)

The challenge

As many as 80% of childhood cancer survivors will have a significant health problem related to their childhood cancer diagnosis or its treatment by age 45. Lifelong side-effects can include developmental disorders, vision and hearing problems, infertility, mental health challenges, and additional cancers, where the substantial burden requires comprehensive long-term survivorship care.

Almost half (45%) of childhood cancers in Australia occur in patients aged 0–4 years at diagnosis, meaning that, in addition to their cancer diagnosis and treatment, a significant proportion of early survivorship and late effects management also occur within the paediatric setting.

For nearly two decades, the Victorian Paediatric Integrated Cancer Service (PICS) has provided a statewide service for survivorship care until age 18, including early intervention and ongoing screening for issues pertaining to childhood cancer or its treatment, through its multidisciplinary Long Term Follow-Up Program (LTFP), facilitating adolescent transition to appropriate adult-focused service providers thereafter. The LTFP has played a critical role in collecting outcomes data and using this to support over 2000 survivors engaged in the program since its inception.

However, patient treatment and subsequent outcomes data has remained incomplete and dispersed across multiple sources, including the LTFP repository, hospital administrative systems, and cancer registry databases. This fragmentation has limited the ability to extract, integrate, and analyse data at a whole-of-state level, which is critical for research and continuous improvements in cancer and survivorship care, patient experience and outcomes.

Until now, Victoria has not had a unified statewide system capable of bridging the interoperability gaps between these data sources, making it difficult for clinicians and researchers to systematically evaluate childhood cancer care pathways, identify service gaps, and implement evidence-based improvements consistently across the state to improve their long-term health and wellbeing.

The research

The Victorian Childhood Cancer Outcomes Registry (VCCOR) is a new statewide database that will securely collate information on children and young people aged 0 to 25 years who have been treated for cancer in Victoria. It is being led by the Victorian Paediatric Integrated Cancer Service in partnership with major children’s cancer centres, including The Royal Children’s Hospital, Monash Children’s Hospital and Peter MacCallum Cancer Centre, as well as the Victorian Cancer Registry.

VCCOR combines key details about each patient’s cancer, treatments, and follow-up care from hospital systems and survivorship clinics, enabling this information to be used safely for service improvement and ethically approved research.

The registry’s model delivers a unique combination of depth, flexibility, and future-readiness critical for modern cancer care, research, and policy. It enables highly granular analysis covering the entire patient journey, from initial diagnosis and treatment to long-term follow-up of health and quality-of-life outcomes and late-effects surveillance. By centralising previously fragmented data sources, VCCOR supports robust, multi-institutional analysis that was previously difficult to achieve at scale.

VCCOR’s governance is guided by legislated healthcare data objectives and principles of good governance, ensuring the secure use, protection, and stewardship of data. Access to the database is limited. Access to data for research will be provided with ethics approvals.

The impact

VCCOR will give clinicians and researchers a much clearer and more complete picture of how children with cancer are diagnosed, treated and cared for over time, and how this affects their health and quality of life. By turning this information into practical insights, the registry will help refine care pathways, support proactive monitoring of late effects, guide the planning and delivery of acute care and survivorship services, and inform policy and service design. In doing so, VCCOR will help ensure that children and young people with cancer, and their families, receive safer, more coordinated and more equitable care across Victoria.

Learn more about VCCOR.

Children's Cancer CoLab Funding Information

Grant/s Awarded (Total): $690,606
‍Project timeline: 1 December 2025 to 30 November 2027
‍Impact Program/s: Innovation Accelerators
‍Scientific Review: Children’s Cancer CoLab Scientific Advisory Committee
‍Lead Institution: Paediatric Integrated Cancer Service
‍CoLab Collaborating Institutions: The Royal Children’s Hospital, Monash Children’s Hospital and Peter MacCallum Cancer Centre
‍Lead Researcher: Ms Justine Carder
‍Associated Researchers: ‍Ms Belinda Zambello and Ms Isha Chawla

Sources

Signorelliet al 2023: https://pubmed.ncbi.nlm.nih.gov/36944156/
Youlden et al 2020: https://pmc.ncbi.nlm.nih.gov/articles/PMC7065138/
‍Australia's children, Cancer incidence and survival - Australian Institute of Health and Welfare