PCOR-NZ Registry

New Zealand Prostate Cancer Outcome Registry |

Rārangi Hua Mate Pukupuku Repe Tātea o Aotearoa

The New Zealand Prostate Cancer Outcome Registry

Rārangi Hua Mate Pukupuku Repe Tātea o Aotearoa

An estimated 4000 kiwis are diagnosed with prostate cancer every year, making it the most common and costly diagnosed male cancer in New Zealand.


There are well known variations in how people are diagnosed and treated for prostate cancer, and in patients' quality of life after treatment. These variations include where people live and what their ethnicity is. Studies have shown that Māori men have a higher death rate from this disease, despite their lower rates of diagnosis.


The New Zealand Prostate Cancer Outcome Registry (PCOR-NZ) captures clinical and quality of life information on people newly diagnosed with prostate cancer across Aotearoa.  It is used for clinical quality auditing; to improve patient diagnosis and treatment outcomes; and  for research purposes.

 

PCOR-NZ contributes to the Prostate Cancer Outcomes Registry Australia and New Zealand;  a bi-national initiative funded by the Movember Foundation & in collaboration with the  following Australian state-based registries: 

Prostate Cancer Outcome Registry- Northern Territory

Prostate Cancer Outcome Registry -Australian Capital Territory

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.

What is the Registry’s purpose?

The registry is a clinical quality registry, auditing the care and treatment of people diagnosed with prostate cancer. The registry aims to improve the wellbeing of those affected by prostate cancer by providing crucial data to doctors and researchers about people's diagnosis, treatment, and quality of life at different time points in their journey. Hospitals and clinicians receive regular reports that can be used to improve treatment and outcomes for their patients. With over 17,000 people contributing already, the registry offers an invaluable national (de-identified) dataset of information for research. All research requests  are reviewed by the steering committee and must meet strict requirement.

The registry operates on a 'wavier of consent' model, which is crucial for a population based registry, but individuals can opt out at any time without any cost or impact on their treatment.

PCOR-NZ in numbers...

17,000

People contributing in the New Zealand registry

75

NZ Clinicians enrolled.
  • 55 Urologists
  • 20 Radiation Oncologists 
  • 1 Medical Oncologist


10,791

  • 6776 pre- treatment questionnaires
  • 4015 12 months post-treatment questionnaires


36

Participating sites 

  • All public hospitals + 16 private urology clinics


Some Common Questions

See some common questions and answers below, or call us at 0800 008 436

  • What is PCOR-NZ

    The Prostate Cancer Outcomes  Registry – New Zealand (PCOR-NZ) 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.

  • Are there any participation costs?

    There are no costs associated with participating in PCOR-NZ. There is no payment for participating. 

    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 outputs, clinical audits  and quality improvement projects coming  out of the Registry.

  • How is PCOR-NZ funded?

    PCOR-NZ is  funded by the Movember Foundation NZ, and is managed by CHOMNZ - a charitable trust,  set up by urology and radiation oncology clinicians wanting to improve outcomes for men diagnosed and treated for prostate cancer in NZ. 

  • What is the PCOR-NZ Registry’s purpose?

    The Registry aims to collect health information for all people diagnosed with prostate cancer in 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 a letter about thie  registry and their involvement from PCOR-NZ. The decision to participate in PCOR-NZ is voluntary. If the person agrees to participate, they do not need to do anything. If the person prefers not to participate, they will need to let us know that they wish to ‘opt out’ of the registry. People 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 person does not opt out, their identifiable data may be provided back to their treating clinician or hospital for quality assurance or care purposes.  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’.

  • Has PCOR-NZ 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. 

  • What kind of information is collected?

    The Registry collects demographic, diagnosis and treatment information about a person’s prostate cancer from their clinical records. We may also send participants quality-of-life questionnaires to complete either before and/or after their treatment. 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 registry database is accessed only by Registry personnel. 

Have you been sent information about PCOR-NZ?

Opt Out

If you have been sent information from PCOR-NZ it is because you have been diagnosed or treated for prostate cancer at a participating hospital or clinic. 


We encourage you to talk to your healthcare team and your family/ whanua about your decision to be involved in the registry. If you are happy to participate, you do not have to do anything. If you would prefer to opt out, you can click the opt out link on this page, call us on the free call number 0800 008 436 or email us directly at pcornz@chomnz.org.nz.

Participant Explanatory statement

Copies of the "Participant Explanatory Statement'"  that would have been sent to you are currently available in English and  te reo Māori. 

Quality of life survey


Questionnaires about  your quality of life before and after treatment may have been sent to you. If you have received a paper version and would prefer to complete the survey  electronically instead, please email or call us and we will send you a  link.

PCOR-NZ Steering Committee Members:

Dr. Phil Hider

(Chair), Epidemiologist

Prof. Frank Frizelle

 Collorectal Surgeon

Associate Prof. Jeremy Millar

Radiation Oncologist

Dr. Kevin Bax

Urologist

Dr. Simon Van Rij

Urologist

Dr. Douglas Iupati

Radiation Oncologist

Chris Ward

Consumer representative

 Rik Tainui

Ngāi Tahu,
Consumer representative

Judith Clarke

PCOR-NZ National Manager

Support Movember

The New Zealand Prostate Cancer Outcome Registry (PCOR-NZ) is a national prostate cancer registry funded by Movember and managed by CHOMNZ. Please considering supporting our project partners Movember.


Sign Up LEARN MORE

PCOR-Registry Team:



Judith Clarke

 National Manager - Christchurch
Email:
judith.clarke@chomnz.org.nz

Liz Mitchell

Data Collector - Christchurch
Email:
pcornz@chomnz.org.nz

Barbara Gordon

Data Collector - Christchurch
Email: pcornz@chomnz.org.nz

Vivienne McLennan

Data Collector - Christchurch
Email: pcornz@chomnz.org.nz

Kim Inskeep

Data Collector - Tauranga
Email:
pcornz@chomnz.org.z

Georgia Noble

Follow up - Christchurch
Phone: 0800 008 436
Email:
pcornz@chomnz.org.nz

Eleanor Sharp

Follow up - Christchurch
Phone: 0800 008 436
Email: pcornz@chomnz.org.nz

Share by: