Aim: To describe the establishment of a national prostate cancer clinical quality registry (PCOR-NZ) within the New Zealand healthcare system and discuss the challenges encountered and achievements obtained during its development. Additionally, to provide a descriptive snapshot of the patients enrolled thus far.
Methods: A review of the processes underpinning the start-up and maintenance of the registry was undertaken. We also extracted data from PCOR-NZ in April 2021 to report on patients diagnosed between 2016 and 2019 that had at least 12 months of follow-up.
Results: Following ethical approval in 2015, a steering committee made up of clinicians, public health specialists and patient representatives was constituted, and site recruitment commenced. Men aged ≥18 years with a diagnosis of incident prostate cancer from participating sites are eligible for enrolment in PCOR-NZ. The registry functions with an opt-out consent model and captures diagnosis, treatment and short-term outcomes, with a particular focus on quality-of-life measures. As of January 2021, 100% of public hospitals and 36% of private urology clinics in New Zealand are actively participating in the registry. 5,858 men, including 411 who identified as Māori (7.0%), were diagnosed between 2016 and 2019 and enrolled in the registry. Population coverage is currently estimated to be almost 70%. Opt-out is estimated to be 2.8%.
Conclusions: PCOR-NZ is providing quality diagnostic, treatment and outcome data for promoting enhancements in the care of men with prostate cancer. The registry resources are therefore valuable for informing and supporting quality improvement resourcing of this common cancer.