NSW Central Cancer Registry

How can the NSW Central Cancer Registry be contacted?

Cancer was the leading cause of death among Australians in 2004 [1]. More than one in four people will develop cancer during their lifetime. As deaths due to heart disease fall, the increased life span affords further opportunity to develop cancer; more than one third of cancer deaths occur in persons aged 75 years and over.

Epidemiological evidence suggests that approximately 80% of cancers are due to environmental factors such as tobacco and alcohol consumption, nutritional deficiencies or excesses, reproductive and sexual behaviour, exposure to sunlight, pollution and occupation. Knowledge of such factors provides the basis for many cancer prevention and control programs.

Although hospital morbidity statistics and death certificates can provide some useful information on cancer epidemiology, the only effective method of obtaining cancer incidence data is registration of cancer cases.

The specific aims of the NSW Central Cancer Registry are to:
· maintain a cancer database of high quality and accessibility;
· produce regular reports on cancer incidence and mortality;
· utilise the data for epidemiological and clinical research; and
· make the data available for use by health providers, planners and educators.

The principal objective of the NSW Central Cancer Registry is to contribute to the prevention, control and treatment of cancer in the population of NSW, in particular, and human populations, in general, by the supply of timely and accurate data based on a total enumeration of cases of cancer in the State of New South Wales.

Information is collected about patients with cancer and includes:

• name and address;
• date of birth;
• country of birth;
• whether the person is of Aboriginal or Torres Strait Islander descent;
• clinical details about the cancer; and
• the notifying institution and doctor.

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.

Notification of cancer is a statutory requirement for all public and private hospitals, radiotherapy departments, nursing homes, pathology departments and outpatient departments. When any of these institutions diagnose or treat someone with cancer, they are required by law to notify the NSW Central Cancer Registry.

Information on the register is used to:

• monitor the number of new cases and deaths from cancer in the NSW population
• compare local and national trends in cancer
• assist in planning services for the control of cancer and the care of cancer patients in NSW; for example, screening programs
• monitor and evaluate the quality of cancer treatment, the outcomes of cancer care and the performance of cancer control programs
• develop education programs, for example, skin protection for schools and outside workers
• provide background data for research
• assist with studies to determine the causes of cancer and to improve the quality of cancer services
• contribute to national monitoring of cancer cases and cancer deaths.

Reports on incidence and mortality from cancer are published regularly. Occasional reports include analyses of trends in NSW, variation according to country of birth or geographical area and reviews of specific cancers. A list of publications is available on request.

The Registry publishes regular reports showing numbers of cases and rates of different types of cancer in summary form. These reports do not disclose names or other identifying information of cancer patients. They are available to anyone.

More detailed information that does not include names of cancer patients is also made available to the NSW Department of Health, health care institutions, health professionals and health researchers.
Bonafide health and medical researchers can apply to obtain information about identified cancer patients. Access is given when certain stringent criteria are met.

The criteria include that the:

• Research they propose must be scientifically sound and likely to contribute to the control of cancer or improvement of the care of cancer patients.
• The Cancer Institute NSW Ethics Committee must review the proposal and approve access to the information. This approval will only be given if the Committee is satisfied that the proposal contains adequate safe guards for the rights of the patients identified and the confidentiality of their information.
• The researchers sign a form committing themselves to use the information only for the purposes approved by the Ethics Committee and to protect the confidentiality and privacy of the information in ways no less stringent than those used by the Cancer Registry itself.

Identified information may also be released to the doctor or health institution that originally provided it and it is given to the Australian Institute of Health and Welfare for the compilation of national cancer statistics.

NSW Central Cancer Registry
Cancer Institute NSW
Locked Bag 1
Woolloomooloo NSW 2011
Email: ccr@cancerinstitute.org.au
URL: www.statistics.cancerinstitute.org.au (Central Cancer Registry Statistical Reporting Module)
Phone: (02) 8374 5749 or
Fax: (02) 8374 5744