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. |
| Functions |
- to identify, collect, classify, record, store and analyse information relating to the incidence and prevalence of cancer and related tumours in Ireland
- to collect, classify, record and store information in relation to each newly diagnosed individual cancer patient and in relation to each tumour which occurs
- to promote and facilitate the use of the data thus collected in approved research and in the planning and management of services;
- to publish an annual report based on the activities of the Registry;
- to furnish advice, information and assistance in relation to any aspect of such service to the Minister.
|
- 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
|
- analyse and report on the data in its national repository of cancer incidence and mortality statistics;
- support research based on these data; and
- 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 (www.ncri.ie/ncri/foifiles/Manual.doc) 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
http://www.cancerinstitute.org.au/data-and-statistics/cancer-registries/nsw-central-cancer-registry-data-access
http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/3414.0main+features782011%20%28Edition%202%29
http://www.aihw.gov.au/cancer/aacr/
Cancer registration in Ireland
http://www.ncri.ie/ncri/index.shtml
www.ncri.ie/ncri/foifiles/Manual.doc
http://www.ncri.ie/pubs/pubfiles/CompletenessQuality.pdf