CANCER INSTITUTE NSW
NAME OF COLLECTION
NSW Central Cancer Registry
The NSW Central Cancer Registry is the agency established under the Public Health Act 1991, to receive notifications of cancer in New South Wales. The Registry is part of the Information and Registries Division of the Cancer Institute NSW.
The NSW Central Cancer Registry is funded and managed by the Cancer Institute NSW on behalf of the NSW Department of Health. The primary role of the Cancer Registry is to:
- act as a population based register of all cancers in NSW residents
- monitor and undertake surveillance of new cases of cancer, survival and deaths in NSW
- supply timely and accurate data based on a total record of all cases diagnosed in residents of NSW
The specific aims of the NSW Central Cancer Registry are to:
- monitor and evaluate the outcomes of cancer care and the performance of cancer control programs in NSW
- assist in planning and monitoring services for the control of cancer and the care of cancer patients in NSW
- evaluate the benefits of screening programs to determine their effectiveness
- produce regular reports on cancer incidence, mortality and survival
- provide descriptive analysis of cancer incidence and mortality
- utilise the data for epidemiological and clinical research
- make the data available for use by health providers, planners, educators and research scientists
- reports and provides data to national and international statistics publications on cancer incidence and mortality
Data collected include demographic information, brief medical details describing the cancer and a record of at least one episode of care. The data are supplemented by pathology reports and death certificates.
The dataset dates back to 1972.
The following institutions have a statutory requirement to notify the NSW Central Cancer Registry whenever they diagnose or treat someone with cancer:
- public and private hospitals
- departments of radiation oncology
- nursing homes
- pathology laboratories
- outpatient departments
- day procedure centres
Cancer registries in other states and territories also provide notifications of cancer in NSW residents.
The notifying institutions collect information about patients with cancer including:
- name and address
Note: (personal details, such as name and address, are needed to ensure that accurate information is recorded for each person and that each new cancer is only counted once in the statistics)
- date of birth
- country of birth
Note: Country of birth is not reported on pathology reports sent to NSW and other Australian registries so that cancers that rely heavily on the pathology report as the primary source of notification (e.g. melanoma) will have a higher proportion of unknown country of birth
- whether the person is of Aboriginal or Torres Strait Islander descent
- clinical details about the cancer, i.e. the primary site of cancer (topography) and cell type (morphology) are coded according to the International Classification of Diseases for Oncology
- the notifying institution, treating doctor and general practitioner
Other information includes:
- cancer incidence, i.e. cancer cases diagnosed in a defined population during a specified period. It is variously used to denote numbers or rates
- cancer mortality, i.e. deaths from cancer in a defined population during a specified period. It may be used to denote numbers or rates
- age-specific rate, i.e. a rate for a specified age group. The numerator and denominator refer to the same age group. It is usually expressed per 100,000 people in the population per year
- age-standardised rate, i.e. standardisation is a set of techniques used to remove (as far as possible) the effects of differences in age or other confounding variables when comparing two or more rates
- relative survival rates, i.e. relative survival rates are derived as the ratios of the observed survival rates to the expected rates of people in the general population with respect to sex, age and calendar period of observation
All information sent to the Registry is kept confidential under tight security and is protected by the Public Health Act and the Health Records Information Privacy Act.
AVAILABILITY OF DATA AND PUBLICATIONS
Data from this ongoing collection are published in the Registry web-based reporting module on the 'Statistics' web page on the Cancer Institute NSW
. Searches on the website can be made by age, region of birth, Area Health Service, Cancer Council region, local government area, state level, socio-economic status and remoteness, five-year trends and frequency.
The data from this collection also contributes to a key report, The Cancer in NSW Incidence and Mortality Report
, which is undertaken by the Registry annually. Descriptive incidence and mortality data are presented for 20 specific cancers and for all cancers; for cancers with other and unspecified site of origin; and for two groups, large bowel and head neck because they are often treated by single multi-disciplinary teams.
The Cancer Institute NSW website can be found at www.cancerinstitute.org.au