Policy
Privacy and data use
This statement explains how the New Zealand Brain Tumour Registry collects, protects, uses and shares information, and the choices you have. It covers the Registry itself and this website.
Privacy and data use at a glance
What we hold
Diagnosis, tumour type and grade, treatment, key dates and outcomes, plus the identifiers needed to keep records accurate and avoid duplicates.
Why we hold it
To measure care and outcomes nationally, feed insights back to clinical services and support approved research.
Who can see it
A small, vetted Registry team. Researchers and services receive de-identified data only after formal review.
Your choices
Ask what we hold about you, request a correction, or opt out at any time by contacting the Privacy Officer.
Who we are and what this statement covers
The New Zealand Brain Tumour Registry (Te Rēhita Puku Roro) is a national clinical quality registry hosted by the Centre for Brain Research at the University of Auckland. We are the agency responsible for the personal and health information the Registry holds, and we are bound by the Privacy Act 2020 and the Health Information Privacy Code 2020.
This privacy and data use statement applies to information held in the Registry and to information collected through this website. It does not replace the privacy policies of the hospitals and services that provide your care.
What information the Registry holds
For each person notified to us with a brain or central nervous system tumour, the Registry may hold:
Identity details such as name, date of birth, NHI number, ethnicity and area of residence, used to match records and to understand equity of access
Diagnosis details, including tumour type, grade, location and the date of diagnosis
Treatment details, such as surgery, radiotherapy, chemotherapy, the services involved and key dates
Outcome information, including follow-up status, recurrence and survival
Linked information from national collections, such as the New Zealand Cancer Registry and the Mortality Collection, to keep records complete
Where the information comes from
Most information comes from the clinical services involved in your care, which notify the Registry as part of routine practice under ethics approval. Some information is drawn from national health collections held by Health New Zealand, and some is added over time as your care continues. We do not collect information directly from you unless you choose to contact us.
How we use information
Information is used only for the purposes the Registry was established for:
Producing national and regional statistics on diagnosis, treatment and outcomes
Returning benchmarking and quality-improvement insights to clinical services
Supporting approved health research, using de-identified data wherever possible
Informing health planning and policy, always with small numbers suppressed
We never sell information, use it for marketing, or share it with insurers or employers.
How information is protected
Protection is built into the design of the Registry, not added afterwards:
Identifying details are separated from clinical data and de-identified before analysis
Data is stored in New Zealand in secure, access-controlled systems with full audit logging
Only named, trained staff can access identifiable information, and only when their role requires it
Every request to use data is reviewed by our governance groups and, where required, by an ethics committee
Published reports never include information that could identify an individual
Who can access data and how requests are assessed
Clinicians receive feedback about their own service. Researchers and planners can apply for access to de-identified data through a formal process that assesses the public benefit of the work, the safeguards in place and alignment with Māori data governance principles. Secure researcher access is planned from 2027, and every approved use is logged and published in our reports.
Māori data sovereignty
We recognise Māori data as a taonga. Our Māori Data Governance Rōpū guides how information about Māori is collected, held, analysed and shared, in line with Te Tiriti o Waitangi and Māori data sovereignty principles. Requests to use data that could affect Māori are assessed with these principles at the centre.
Your rights and choices
Under the Privacy Act 2020 you can ask what information we hold about you, request a copy, and ask us to correct anything that is wrong. You can also opt out of the Registry at any time. If you do, we will stop collecting new information about you and remove your identifiable record from future analyses. Opting out will not affect the care you receive.
Make a request or opt outThis website
This website collects only the information needed to run it. If you use the contact form or the newsletter form, the details you enter are emailed to the Registry team and, for newsletter sign-ups, added to our mailing list; they are not stored on the website. The accessibility toolbar saves your display preferences in your own browser. We do not use advertising, analytics or tracking cookies. If we introduce analytics in future, we will add a consent banner and update this statement first.
Questions or complaints
Contact our Privacy Officer at info@nzbtr.org.nz or through the contact page. If you are not satisfied with our response, you can complain to the Office of the Privacy Commissioner.
Questions about your information?
Our Privacy Officer can explain what we hold, how it is used and how to opt out.