✉ info@nzbtr.org.nz
📍 Centre for Brain Research, University of Auckland
✉ info@nzbtr.org.nz
📍 Centre for Brain Research, University of Auckland
The Registry is overseen by the people who use it, the people it describes and the people who protect their interests. This page explains who makes decisions, how they are made, and the organisations we work with across Aotearoa.
A Steering Group holds overall accountability for the Registry. Three advisory groups bring clinical, Māori data and lived-experience perspectives to every policy, every data request and every publication.
Sets strategy, approves policies and budgets, and signs off every data-access decision. Members include the clinical director, the Registry manager, the host institution and the chairs of the three advisory groups.
Meets quarterly · Chair to be confirmed
Neurosurgeons, neuro-oncologists, radiation oncologists, radiologists, pathologists and nurse specialists nominated through NANOS. They own the data dictionary and decide what feedback each service receives.
Meets every two months · Reports to the Steering Group
Guides how information about Māori is collected, held, analysed and shared, in line with Te Tiriti o Waitangi and Māori data sovereignty principles. Reviews every request that could affect Māori.
Meets quarterly · Can decline requests affecting Māori data
People living with a brain tumour diagnosis, carers and whānau. They test every public report and patient resource for plain language, tone and usefulness before it is released.
Meets quarterly · Reviews all public communications
Whether it is a research application, a service feedback report or a new partnership, every request follows the same four steps and the same principles.
Public benefit comes first
Only the minimum data needed
De-identified wherever possible
Māori data governed by Māori
Every access logged and published
Time-limited, renewable approvals
Anyone can request data or propose a partnership through the contact page. The Registry team checks completeness and ethics status within ten working days.
Requests are matched against the data access principles: public benefit, minimum necessary data, de-identification and time limits.
The clinical, Māori data governance and consumer groups review in parallel. Any group can ask for changes or decline the request.
The Steering Group makes the final call. Every approved use is logged and listed in the annual governance report, so anyone can see how Registry data is being used.
These documents are being finalised with the governance groups and will be published here as each one is approved.
Membership, responsibilities, decision rules and how conflicts of interest are managed.
Expected early 2027
Who can apply for data, what they receive, the safeguards required and how approvals are reviewed.
Expected early 2027
How Te Tiriti o Waitangi and Māori data sovereignty principles are applied across the Registry.
Expected 2027
Every data request received, every decision made and how the Registry performed against its principles.
First edition 2027
No single organisation can describe brain tumour care nationally. Our partners contribute data, expertise, oversight and reach, and each one has a seat at the governance table.
Host institution · Centre for Brain Research
Hosts the Registry team, its secure data infrastructure and its ethics and research administration.
auckland.ac.nz
New Zealand Aotearoa Neuro-Oncology Society · Clinical leadership
Nominates the Clinical Advisory Group, peer-reviews the data dictionary and champions notification in every service.
Hospitals and health services · Data contributors
Neurosurgical, oncology, radiology and pathology services that notify new diagnoses and receive feedback reports in return.
Universities, institutes and funders · Research users
Researchers who will access de-identified data from 2027, and the funders and ethics committees whose approval every study needs.
Nominate for the Clinical Advisory Group through NANOS, or tell us about a study you would like the Registry to support.
Register your interestBring lived experience to the Consumer and Whānau Advisory Group. Training, support and reimbursement of costs are provided.
Ask about joiningHospitals, universities, funders and community organisations can partner with the Registry on data, research or infrastructure.
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