Australian Mesothelioma Registry
Australian Mesothelioma Registry (AMR)
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What are state and territory cancer registries?

State and territory cancer registries are databases that receive notifications about all people who have been diagnosed or treated with cancer. This information is received under the authority of relevant state and territory legislation. One of their purposes is to assist analyses into the causes, prevention and treatment of cancer. Notification of cancer is a legal requirement for all public and private hospitals, radiotherapy departments, nursing homes, pathology laboratories and outpatient departments.

Is the AMR linked to other national databases?

To accurately estimate survival, the AMR must have complete information about deaths from mesothelioma. To do this, AMR will link to the National Death Index (NDI) on an annual basis. The NDI is held by the Australian Institute of Health and Welfare (AIHW).

What is in the Patient Information Pack?

Each Patient Information Pack should include a:

  1. Cover Letter
  2. Information Sheet (blue paper)
  3. Consent Form (yellow paper, attached to questionnaire)
  4. Postal Questionnaire
  5. Patient's state or territory cancer registry brochure (optional:dependant on individual state/territory)
  6. Language Assistance Sheet
  7. Reply-paid envelope

Does the AMR have the relevant ethical approvals?

The AMR operates with approval from ethics committees in each state and territory, Monash University and the Australian Institute of Health and Welfare (AIHW).

How is my information kept private and confidential?

The AMR complies with Commonwealth, state and territory privacy legislation. All information collected is kept strictly confidential at all times and is stored in accordance with privacy preserving principles.

Data will only ever be published in a format that does not identify individuals. 

Can researchers apply for AMR data?

Researchers can apply to obtain more detailed information about mesothelioma cases under strict conditions:

  • Their research must be scientifically sound and be able to contribute to mesothelioma prevention or improved care for people with mesothelioma.
  • The research must be approved by an Ethics Committee.
  • The person whose information is obtained has given their consent.
  • Researchers sign an undertaking to keep the information strictly confidential.

If researchers wish to apply for AMR data, they should submit their request in writing or contact us. Please refer to the Data Access page for more details.

Is the AMR involved with compensation matters?

The AMR is not involved with handling compensation, but the support groups we provide on our website would be able to provide some legal advice for patients and their families.

Where can I get help with completing forms and postal questionnaire?

Your  next-of-kin or your local asbestos victim support group may be able to provide assistance with completing the Postal Questionnaire. Language assistance and translation services are also available. Please contact the AMR Information Line for more information.

What if I can't remember all my history information for the Postal Questionnaire?

Don't worry if you can't remember all your histories. Any information you supply is valuable. You may also contact the AMR Information Line for assistance.

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