Australian Mesothelioma Registry (AMR)
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.
- We have a commercial fee-for-service agreement with the Cancer Institute NSW to manage the AMR for us and carry out its functions.
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.
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 estimate their past exposure to asbestos.
Objectives of the AMR include:
- Accurately measure the incidence of mesothelioma in Australia in order to monitor changes and identify groups most at risk so future exposure can be prevented.
- Permit periodic assessment of mesothelioma survival to ascertain whether changes in care are resulting in measurable improvements in survival.
- Document the asbestos or other exposure experience of people newly diagnosed with mesothelioma as a form of surveillance for new or increasing sources of exposure to asbestos or other carcinogens.
- Provide a resource for research into the causes and control of mesothelioma.
- Inform policies to best deal with the asbestos still present in our environment.
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.