New Zealand Brain Tumour Registry emblem

The Registry

A trusted national picture of brain tumours in Aotearoa

New Zealand’s national brain tumour registry brings clinical information from across the motu into one secure, well-governed dataset, so clinicians, researchers and planners can see the whole picture, and patients and whānau can trust how their information is used.

How it works Data & governance →

Nationwide

Designed to include every hospital and health service that diagnoses or treats brain tumours in Aotearoa.

Ethics-approved

Operating under ethics approval, with privacy, consent and de-identification built into every step.

Clinically led

Shaped by neuro-oncology clinicians through NANOS and the hospital teams who care for patients every day.

Equity-focused

Committed to Māori data sovereignty and to understanding differences in access, treatment and outcomes.

What we collect

Core data, carefully defined

The Registry captures a focused set of clinical information for every eligible brain tumour diagnosis. Each data item is defined nationally, so information recorded in Whangārei means exactly the same thing as information recorded in Invercargill.

Identifying details are stored separately from clinical data and are never included in reports.

How your data is protected →

Diagnosis & pathology

Tumour type, grade and location, molecular markers, and the date and method of diagnosis.

Treatment pathways

Surgery, radiotherapy, chemotherapy and supportive care, including timing and the treating service.

Outcomes & follow-up

Progression, recurrence and survival, recorded consistently so that trends can be measured over time.

Demographics & equity

Age, sex, ethnicity and region, so the Registry can show where care is working well and where gaps exist.

How it works

From diagnosis to insight in four steps

The Registry is designed to fit around existing clinical work, adding as little extra effort as possible for busy teams.

Notification

Treating hospitals notify the Registry of a new brain tumour diagnosis through their existing clinical systems.

Data capture

Clinical teams record the core dataset using a shared national data dictionary, with support from Registry staff.

Quality & governance

Records are checked, coded and de-identified, and every use of the data is reviewed by the governance group.

Insight & access

Aggregated findings are published openly, and approved researchers can apply for secure access to detailed data.

Data & governance

Your information, protected

Trust is the foundation of the Registry. Governance, privacy and Māori data sovereignty are designed in from the start, not added later.

Ethics approval and annual review

Te Tiriti-aligned Māori data governance

De-identified data for research and reporting

Secure, access-controlled infrastructure

Independent governance group oversight

Clear processes to ask questions or opt out

Common questions

Who can access Registry data?

Aggregated, de-identified findings are published for everyone. Detailed data is only available to approved researchers and clinicians through a formal application reviewed by the governance group.

How is my privacy protected?

Identifying details are stored separately from clinical information, every access is logged and audited, and published reports use methods that prevent individuals being identified, including the suppression of small numbers.

Can I choose not to be included?

Yes. Patients and whānau can ask for their information to be removed, or not used for research, at any time by contacting the Registry. This has no effect on the care you receive.

Who governs the Registry?

A governance group with clinical, research, Māori and consumer representation oversees the Registry, supported by the Centre for Brain Research at the University of Auckland.