Comparing the Australian and Irish Cancer Registries

Having just moved from Australia to Ireland to do a post-doc at the National Cancer Registry, I was interested in comparing the Australian and Irish cancer registration systems.  Both countries have excellent cancer registries, with some similarities as well as differences between them.  A table comparing the features of each system is below, but the primary differences are around the method of collecting data for the registry, and the amount of information captured.

In Ireland the Department of Health and Children has funded the National Cancer Registry Ireland since 1994.  Cancer registration is not mandatory.  However, data capture is close to complete through a system of active data collection through trained registry employees being stationed at hospitals around the country to collect cancer cases and data.  Most new registrations are identified through the pathology report, however public hospitals also produce lists of cancer cases discharged each year, and death notices are checked as well.  Six to twelve months after a new cancer notification, the tumour registration officer pulls the medical record for each notification, and completes the data entry.  Information is collected on the individual, the cancer and their initial treatments, with the full data list provided in the registry manual (p9) here.  Cancers are registered at the level of the individual, but are analysed at the tumour level.

In Australia, each state has an independent cancer registry, which reports a standardised minimum dataset to the National Cancer Statistics Clearinghouse at the Australian Institute for Health and Welfare (AIHW).  The New South Wales (NSW) registry, managed by the Cancer Institute NSW, is described here as an example.  Throughout Australia reporting of cancers (other than basal and squamous cell carcinomas of the skin) is mandatory, and whenever a hospital, pathology lab or radiotherapy centre deals with someone with cancer they are required by law to notify the cancer registry.  Basic demographic, cancer and doctor information is obtained and supplemented with pathology reports and death certificates; however this is less extensive than in the Irish system.  Cancers are registered at the tumour level.

Both registries produce very similar statistics such as incidence, prevalence and mortality rates, as well as specialised publications for topic areas of specific interest to the country.  Data is made available by both registries to the government and other researchers, following appropriate ethical review and de-identification.

Table 1: Features of the Irish and Australian cancer registries compared

Feature National Cancer Registry (NCR)   Ireland New South Wales (NSW) Central   Cancer Registry Australia Association of   Cancer Registries (AACR)
Funding Department of Health and Children NSW Health through Cancer Institute NSW Department of Health
Established 1994 1991.  Dataset dates back to   1972 1982
Direction provided by National Cancer Registry Board Cancer Information and Registries Advisory Committee within Cancer   Institute NSW The AACR Executive Committee advises the AIHW on the direction of the   National Cancer Statistics Clearinghouse (NCSCH) work program and the   development of publication topics and strategies, and provides technical   advice on the operation of the NCSCH.
  1.   to   identify, collect, classify, record, store and analyse information relating   to the incidence and prevalence of cancer and related tumours in Ireland
  2.   to   collect, classify, record and store information in relation to each newly   diagnosed individual cancer patient and in relation to each tumour which   occurs
  3.   to promote   and facilitate the use of the data thus collected in approved research and in   the planning and management of services;
  4.   to publish   an annual report based on the activities of the Registry;
  5.   to furnish   advice, information and assistance in relation to any aspect of such service   to the Minister.
  1.   act as a   population based register of all cancers in NSW residents
  2.   monitor   and undertake surveillance of new cases of cancer, survival and deaths in NSW
  3.   supply   timely and accurate data based on a total record of all cases diagnosed in   residents of NSW



  1.   analyse   and report on the data in its national repository of cancer incidence and   mortality statistics;
  2.   support   research based on these data; and
  3.   develop   and improve cancer statistics generally.
How are cancers registered The reporting of cancer is not mandatory, however the NCR uses active   ascertainment and follow up to ensure that there is accurate and complete   recording of all cases diagnosed. Tumour Registration Officers employed by   the registry are based at hospitals nationally.  The main source of notification of new   cases is a pathology report, however each public hospital provides a list of people   discharge with cancer which is checked against the registry, as well as   checking death notices and receiving notifications from registries in the UK. All Australian states and territories have legislation that makes the   reporting of all cancers (other than basal and squamous cell carcinomas of   the skin) mandatory. State and territory population-based cancer registries   receive information on cancer diagnoses from a variety of sources such as   hospitals, pathology laboratories, radiotherapy centres and registries of   births, deaths and marriages. When any of these institutions deal with   someone with cancer, they are required by law to notify the cancer   registries. The cancer   registry in each state or territory sends information to the National Cancer Statistics Clearing House at the AIHW to compile into a   national database of cancer incidence, the Australian Cancer Database.Cancer   data are also made available to the World Health Organization, state and local government   authorities, health care institutions, health professionals and medical   researchers.
What information is collected The medical records are retrieved 6 – 12 months after notification to   complete case information and capture relevant treatment information.  Validation checks are performed at the   point of entry and internal verifications are carried out monthly.  See page 9 of the manual (   for details of data collected. The CCR records new cancer cases and does not capture cancer   recurrence.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.
  •   name and   address
  •   sex
  •   date and   country of birth
  •   Aboriginal   or Torres Strait Islander descent
  •   clinical   details about the cancer
  •   the   notifying institution and doctor
Definition of a cancer Cancers are registered at the level of the individual, but are   analysed at the level of the cancer.  Metastasise   are associated with the primary tumour and not considered separate cancers. A case of cancer is the occurrence of a primary malignant neoplasm in   one organ of a particular person.    Therefore a case of malignant melanoma in an individual counts as one   case.  If the same person then develops   leukemia, this counts as a second case.


My sources, and for more information:

Cancer registration in Australia

Cancer registration in Ireland