NEW ZEALAND HEALTH INFORMATION SERVICE

Home > data and services > guide to data collections

Scope

Purpose
The New Zealand Cancer Registry is a population-based register of all primary malignant diseases diagnosed in New Zealand, excluding squamous cell and basal cell skin cancers. Data is used in research, and in monitoring and evaluating cancer screening programmes.

Content
A summary of the variables to be reported is contained in the Cancer Registry Regulations 1994.

Start date

The NZCR was set up in 1948 primarily using information sent by public hospitals to the NMDS. The Cancer Registry Act 1993 and Cancer Registry Regulations 1994 were introduced to increase reporting of primary cancers in New Zealand. Since the Cancer Registry Regulations 1994 came into effect, laboratory test results have been collected and the data quality and completeness have significantly improved.

Guide for use

The tumours are classified using the WHO International Statistical Classification of Diseases and Related Health Problems (ICD), and the WHO International Classification of Diseases for Oncology (ICD-O). All data is mapped forward to ICD-10. For more information, refer to the NZCR Data Dictionary.
Before 1997, there was inadequate staging information (ie, reporting of the extent of the disease) and morphology information. NZHIS is now working with clinicians to improve this.

Contact information

For further information about this collection or to request specific datasets or reports, contact the NZHIS Analytical Services team, on ph 04 816 2882, fax 04 816 2898, or e-mail data-enquiries@moh.govt.nz.

Collection methods – guide for providers

Laboratories are the primary source of cancer data to the NZCR. They are required by law to report any new diagnosis of cancer in New Zealand, excluding squamous and basal cell skin cancers. Currently, they send in paper pathology reports to NZHIS.
Additional data sources include: Medical Certificates of Causes of Death, Coroners’ Findings, hospital discharge data on the National Minimum Dataset (NMDS), and private hospital discharge returns.

Frequency of updates

Data is loaded from the NMDS monthly. Information provided in hard copy form is updated manually on an ongoing basis.
Some types/sites of cancer are of particular interest to researchers and the processing of these cancers is treated as a priority. These types/sites include: melanoma, prostate, breast, cervix, colorectal, and childhood cancers. The processing of data for these priority cancers is kept up to date to within three months of receipt of laboratory reports.

Security of data

The NZCR is only accessed by authorised NZHIS staff for maintenance, data quality, analytical and audit purposes.
Paper records are stored in a locked office with swipe-card security, and in a locked basement storeroom at the Ministry of Health.

Privacy issues

The Ministry of Health is required to ensure that the release of information recognises any legislation related to the privacy of health information, in particular the Official Information Act 1982, the Privacy Act 1993 and the Health Information Privacy Code 1994.
Information available to the general public is of a statistical and non-identifiable nature. Researchers requiring identifiable data will usually need approval from an Ethics Committee.

National reports and publications

NZHIS publishes an annual report Cancer – New Registrations and Deaths. This publication contains detailed information on numbers and rates of cancers according to year of registration.
More timely provisional cancer data for the priority sites is posted in the Health Statistics section of this site.

Data provision

Customised datasets or summary reports are available on request, either electronically or on paper. Staff from NZHIS Analytical Services team can help to define the specifications for a request and are familiar with the strengths and weaknesses of the data.
The NZHIS Analytical Services team also offer a peer review service to ensure that NZHIS data is reported appropriately when published by other organisations.
There may be charges associated with data extracts.


Top  Back