Safe Work Australia funds the Australian Mesothelioma Registry (AMR), which is managed by the Australian Institute of Health and Welfare. The AMR collects information on all new cases of mesothelioma diagnosed since July 2010 from state and territory cancer registries to which notification of mesothelioma is mandatory, as well as information on patient mortality and asbestos exposure experience.
Mesothelioma: a definition
Mesothelioma is a fatal cancer that typically occurs 20 to 40 years after exposure to asbestos. Exposure does not necessarily result in the disease.
AMR purpose and objectives
The purpose of the AMR is to compile a national data set of mesothelioma cases in Australia, including asbestos exposure information. This data set seeks to contribute to reducing the incidence of mesothelioma and dealing with asbestos present in Australia, by supporting and informing research, operational activities, policy and program development, and public awareness raising and educational campaigns.
The objectives of the AMR include:
- The collection of timely notifications of mesothelioma diagnoses to support:
- early engagement with mesothelioma patients to collect asbestos exposure information (Objective 2), and
- analysis and reporting on the incidence of mesothelioma, including changes in trends or patterns.
- Document, assess and report on the asbestos exposure of people diagnosed with mesothelioma since July 2010.
- an accessible resource for research associated with mesothelioma, and
- a credible source of data to support operational policies and activities, as well as policy and program development associated with asbestos present in Australia.
Asbestos exposure questionnaire
Patients diagnosed with mesothelioma who consent to being involved in the AMR’s asbestos exposure assessment are sent a questionnaire to record their residential and occupational history, and whether they have undertaken any tasks outside their paid work that may have resulted in exposure to asbestos.
Their history is used to identify the jobs or other circumstances most likely to have exposed them to asbestos. This information is used to ask patients a set of specific questions that help researchers assess their past exposure to asbestos including the probability of the exposure by occupation or non-occupational.
The AMR publishes reports on the rates of new cases and deaths from mesothelioma in Australia as well as information about patterns of exposure to asbestos in mesothelioma patients.
In addition to collecting data and producing periodical reports, the AMR also provides access to both de identified aggregate data and more detailed unit record data to those carrying out investigations, research or other activities related to mesothelioma.
The processes for requesting and gaining approval to access the AMR data are outlined in the AMR’s Data Access Policy, available on its website.
Visit the AMR website for the latest publications and more information about the registry. For further information on the AMR and processes for requesting and gaining approval to access the AMR data contact the Australian Institute of Health and Welfare.