Our journey
From a shared idea to a national registry
The Registry began with a simple question from clinicians and researchers: how many people in Aotearoa are diagnosed with a brain tumour each year, and how are they doing? Answering it well takes partnership, careful governance and time. This is where we are on that path.
Phase 1 of 3 underway
Updated as each milestone is reached.
Milestones
Our journey so far
Building a registry that people can trust means doing the unglamorous work first: agreeing definitions, securing ethics approval and putting governance in place before the first record is collected.
Learn how the Registry works →A shared vision
Neuro-oncology clinicians, the Centre for Brain Research and NANOS agree that Aotearoa needs a national brain tumour registry, and begin scoping what it should collect.
Partnerships and governance
A steering group is formed with clinical, research, Māori and consumer representation, and the governance framework is drafted.
Ethics and data design
The national data dictionary is defined and the ethics application is submitted, with privacy and Māori data sovereignty built in from the outset.
Infrastructure and engagement
Secure infrastructure is established, hospital partners begin onboarding, and the Registry's public presence launches.
First national reports
The first National Data Overview is expected, alongside secure researcher access and the Research Collaboration Guide.
Our journey in pictures
The work behind the milestones
Every step of our journey has been shaped by the people doing the work: clinicians reviewing scans, researchers designing studies, and analysts making sure every record is coded the same way. Our journey is as much about those relationships as it is about data.
Scans and records once lived in separate systems in every region.
Radiology and pathology teams helped define what a complete record looks like.
Research partners test how registry data can support new studies.
Clinical teams review feedback from the first notification cycles.
Our journey has also depended on the organisations around us. The Centre for Brain Research hosts the Registry and its data team, and every study design and data request is reviewed under New Zealand’s national ethics framework before any information is used. Both are worth knowing about if you plan to work with us, and both milestones shaped how the Registry operates today.
Now, next and beyond
Three phases, one goal
Building the foundation
Establishing infrastructure, securing partnerships, engaging stakeholders, and creating a clear, trusted public presence.
Expanding access
Growing data collection, launching secure researcher access, and publishing our first reports and findings.
Interactive insights
Dashboards, real-time data visualisation, and integration with clinical workflows to support care at every level.
“A registry is only as strong as the trust behind it. Every decision we make starts with the people whose information we hold.”
Registry Steering Group · Centre for Brain Research
Get involved
Help shape the next chapter
Clinicians
Help define the data that matters and connect your service to the Registry as hospital onboarding continues.
Talk to us →Researchers
Register your interest in secure data access and future collaborations before the first release.
Register interest →Patients & whānau
Share your perspective on how information should be used, protected and communicated back to the community.
Share your views →Follow our progress
We publish updates as milestones are reached. Read the latest news, or subscribe and we will let you know when the first reports are released.