The Prostate Cancer Outcomes Registry – New Zealand (PCOR-NZ) is an initiative proudly funded by the Movember Foundation in partnership with CHOMNZ.
This project focuses on the collection and reporting of data from thousands of men across New Zealand to better understand their prostate cancer journey and how it can be improved.
The Prostate Cancer Registry
The Prostate Cancer Outcome Registry Australia and New Zealand (PCOR-ANZ) is a bi-national prostate cancer registry funded by Movember and managed by Monash University.
New Zealand has its own registry (PCOR-NZ), and contributes de-identified data to the Australia-New Zealand registry and a small number of sites also contribute de-identified data to an international registry (known as TrueNTH Global Registry) involving over 100 hospitals in 13 countries.
The New Zealand Prostate Cancer Outcome Registry (PCOR-NZ) is managed through a charitable trust, the Centre for Health Outcome Measures NZ (CHOMNZ) based in Christchurch and overseen by trustees from the Urology and Radiation Oncology sector. A NZ Steering Committee has been establisheed to ensure collected data is used and managed appropriately and in accordance with NZ legislation. In New Zealand, all public hospitals and 13 private clinics are participating in the Registry. Over 12,000 NZ men have already contributed to PCOR-NZ.
What is the Registry’s purpose?
The Registry aims to collect health information for all men diagnosed with prostate cancer in Australia and New Zealand. The Registry is notified of a new positive diagnosis either directly
from the participating hospital/clinic or via the NZ Cancer Registry (NZCR). If the newly diagnosed person is eligible, they will receive information from PCOR-NZ. The decision to participate in PCOR-NZ is voluntary. If men agree to participate, they do not need to do anything. If a man prefers not to participate, they will need to let us know that they wish to ‘opt out’ of the Registry. Men can opt out of the Registry at any time, by calling the free call number 0800 008 436 or emailing pcornz@chomnz.org.nz. If the man does not opt out, their identifiable data may be provided back to their treating clinician or hospital for quality assurance or care purposes. Participants do not receive any direct benefit from their involvement in PCOR-NZ; however men with prostate cancer in the future may benefit from healthcare improvements produced by the research and reports out of the Registry.
Has it been approved?
PCOR-NZ has been reviewed and approved by the Health and Disability Ethics Committee and at all participating Health Institutions across New Zealand. The research conforms to the National
Ethical Standards for Health and Disability Research and Quality Improvement, and the NZ Privacy Act 2020.
Are there any costs?
There are no costs associated with participating in PCOR-NZ. There is no payment for participating.
What kind of information is collected?
The Registry collects demographic, diagnosis and treatment information about men’s prostate cancer from their clinical records. We may also send them quality-of-life questionnaires to complete. All data is safeguarded by Australia and New Zealand privacy and confidentiality laws. The Registry security is maintained using encryption of data and is housed in an ISO 27001 certified environment. The information is accessed only by Registry officers. Participants de-identified data may be used for research purposes only if approved by the PCOR-NZ Steering Committee according to the ‘PCOR-NZ Data Release Policy’.
Who is funding the Registry?
The Registry is funded by The Movember Foundation, with the support of all clinical specialties managing prostate cancer.
Click here to learn more about the PCOR-ANZ project and to see which hospitals and private clinics are participating in NZ.
Click here to meet the PCOR-NZ team
