ABOUT THE PROJECT

The most effective way to accelerate research and support clinicians in making more accurate diagnoses and treatment decisions is through access to high-quality patient data. The greater the volume of data, the more reliable and meaningful the insights become. As paediatric brain cancer remains a relatively rare disease, individual case numbers are low — making the national pooling of Australian data essential to improving outcomes. Patient data includes the medical images, pathology and histolgy results, clinical notes, treatment plans, medicines given, clinical trials and quality of life information. Linking each of these data types for every patient provides powerful insight into individual patient journeys. It not only deepens our understanding of different brain tumour types, but also strengthens our knowledge of treatment approaches and their outcomes.

Transforming Paediatric Brain Cancer Data

Currently, each research project that requires patient data must manually extract and link relevant information specifically for that individual study. This process is costly and inefficient. Additional challenges include:

i) differing data and privacy legislation across Australian states;

ii) data security requirements; and

iii) data types are stored across multiple systems that do not always integrate.

Even when considering clinical records alone, hospitals often use different recording and storage systems that are not compatible.

This project aims to demonstrate a national model in which data can be automatically extracted, translated to the same language for comparisons and securely transferred into a single cloud-based platform where individual patient data can be linked together from hospitals across Australia. Researchers and doctors with the correct approvals can access the information. We have engaged with government agencies about this project, as our long-term goal is to secure sustainable government funding to support it into the future.

In phase 1 we want to demonstrate how de-identified clinical records and images (e.g. MRI, CT, PET-scans) can be securely transferred into the platform and linked with parental consent.

2025 NPBCL Platform Achievements:

funding

Partnered with ANZCHOG to secure $320,355 MRFF funding via the CoACT: Brain Cancer program grant (MRF2038070).

Digital Research Environment

Built the BioGrid Digital Research environment for the Platform.

Clinical Workflow

Designed clinical data workflow -automation of clinical data extraction, de-identification of data, data transformation and transfer to the BioGrid DRE.