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New Zealand Cancer Registry

The New Zealand Cancer Registry (NZCR) is a population-based register of all primary malignant tumours diagnosed in New Zealand, excluding squamous and basal cell skin cancers.

NZCR provides data for public health research, policy formulation, monitoring screening programmes, and cancer incidence and survival studies.

Scope

Purpose

The Cancer Registry Act 1993 states that the purposes of the New Zealand Cancer Registry are:

  1. To provide information on the incidence of, and mortality from, cancer; and
  2. To provide a basis for cancer survival studies and research 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. The Cancer Registry Act 1993 and Cancer Registry Regulations 1994 were introduced to increase reporting of primary cancers in New Zealand. Since this legislation came into effect laboratory test results have been collected, and data quality and completeness have significantly improved.

Information sources

Laboratories are the primary source of cancer data for the NZCR. They are required by law to report any new diagnosis of cancer in New Zealand, excluding squamous and basal cell skin cancers. Laboratories meet this requirement by providing copies of relevant pathology reports to NZCR. Since 2003 most pathology reports have been sent electronically.

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.

Tumour coding

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).

Staging information is collected where available. Because pathology reports are the main source of data this information is most complete for tumours where the primary treatment is surgical (eg, melanoma, breast and colorectal cancers).

Data processing timeframes

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, lung, and haematological 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 system is only accessed by authorised Ministry of Health staff for maintenance, data quality, analytical and audit purposes. Any paper records are stored in a locked office with swipe-card security.

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

The National Collections and Reporting Group 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. A second publication entitled Cancer Patient Survival is published every 4-5 years building on the previous one.

More timely provisional cancer data for the priority sites is posted in Cancer data and stats.

Data provision

Customised datasets or summary reports are available on request, either electronically or on paper. Staff from the Analytical Services team can help to define the specifications for a request and are familiar with the strengths and weaknesses of the data.

The Analytical Services team also offer a peer review service to ensure that national collections data is reported appropriately when published by other organisations.

There may be charges associated with data extracts.

Contact

For further information about this collection or to request specific datasets or reports email data-enquiries@moh.govt.nz.

Related areas

Page last updated: 10 February 2012