Background: The Victorian Paediatric Integrated Cancer Service’s (PICS) Long Term Follow Up (LTFP) repository was outdated; providing an opportunity to redevelop the system and enhance longitudinal tracking of health outcomes for all paediatric cancer patients diagnosed and treated in Victoria. Supported by a grant from the Medical Futures Research Fund (MRFF) through the Victorian Paediatric Cancer Consortium, PICS is developing the Victorian Childhood Cancer Outcomes Registry (VCCOR), with a focus on the long-term effects of childhood cancer and cancer treatments.
Method: A governance committee was formed, and ethics approval was granted across partnering Victorian primary treatment centres: The Royal Children’s Hospital, Monash Children’s Hospital, and Peter MacCallum Cancer Centre. Leveraging PICS’ network role, business and functional requirements were gathered through stakeholder consultation. Following a structured procurement process, a collaboration was established with the New Zealand National Child Cancer Network, to adapt and expand their software for use in both countries and align datasets.
Results: Through report-focused design and rigorous software testing, PICS has ensured that the registry’s granularity supports a broad range of research and service improvement questions, aligning the registry with the latest survivorship research and clinical care standards. The database has been designed in Microsoft Azure for security, sustainability and ease of integration with other relevant hospital systems and datasets, records from the Victorian Cancer Registry, and dashboard and AI reporting tools. Migration of over 2000 patients from the redundant LTFP repository will be achieved by the end of 2025.
Conclusion: PICS aims to deliver a configurable, sustainable outcomes registry, tracking paediatric cancer patients in Victoria from diagnosis to survivorship. VCCOR will enable automated integration, advanced analytics, support research, drug therapy and clinical trials and could complement longitudinal studies of adult survivors of childhood cancer; informing clinical decisions and driving improvements in paediatric oncology care and patient outcomes.