QLTI-19. Establishing a National Brain Tumour Registry in New Zealand – Learning from other national disease and global brain tumour registries

Aotearoa New Zealand is a developed country with a small population (less than 6 million) with a highly regarded public health system. Despite this, it currently lacks a dedicated national brain tumour registry, and this absence has led to significant gaps in our understanding of brain tumour incidence, particularly in relation to low-grade primary brain tumours and secondary tumours. This is hampering progress in research, clinical trial recruitment, service planning, and evidence-based policy development. To address this, the New Zealand Aotearoa Neuro-Oncology Society (NANOS - https://nanos.co.nz) established a national registry working group. This group comprises multidisciplinary specialists representing all neuro-oncology centres across the country and is working toward unifying efforts to improve data infrastructure and outcomes for brain tumour patients in New Zealand. As part of our preparatory work, we researched and compared existing disease registries in New Zealand and various brain tumour registries operated internationally. This included an in-depth analysis of registry structures, governance models, data collection standards, and the demonstrated impacts these registries have had on patient outcomes, research productivity, and health system efficiency. Drawing from these global experiences, we developed a framework for implementing a national brain tumour registry in partnership with governmental health agencies. This work presents our findings and outlines the key components of our proposed registry model. We aim to foster knowledge exchange by sharing our development process with the international neuro-oncology community. We also wish to encourage other countries, particularly those without such infrastructure, to consider establishing their brain tumour registries. In doing so, we believe the global neuro-oncology field can move toward greater collaboration, standardisation of data, and ultimately, improved care for patients affected by these devastating diseases.