THE AUSTRALIAN MESOTHELIOMA REGISTRY (AMR)

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1 THE AUSTRALIAN MESOTHELIOMA REGISTRY (AMR) Professor Nico van Zandwijk Director Asbestos Diseases Research Institute

2 US US UK UK COUNTRY NZ CAN COUNTRY NZ CAN AUS AUS Mesothelioma International context Australia has among the highest incidence rates of mesothelioma Incidence (males): Australia, Canada, New Zealand, UK and US WA SA QLD NSW VIC ACT TAS AGE-STANDARDISED INCIDENCE RATES Incidence (females): Australia, Canada, New Zealand, UK and US QLD SA WA NSW VIC TAS ACT AGE-STANDARDISED INCIDENCE RATES Northern and Yorkshire Northern Ireland Merseyside and Cheshire South and West Scotland Thames East England North Western Oxford Trent West Midlands East England Northern and Yorkshire Oxford Thames Merseyside and Cheshire North Western South and West Trent West Midlands Northern Ireland Scotland SEER (14 cancer registries) SEER (14 cancer registries) Source: Curado et al (eds), IARC,

3 Mesothelioma Registries in Australia Difficult to accurately determine trends in the mesothelioma epidemic Western Australian Mesothelioma Register current Australian Mesothelioma Register Australian Mesothelioma Surveillance Programme National workshop on mesothelioma surveillance Australian Mesothelioma Registry 2010-current 3

4 Accurately describing the Mesothelioma epidemic in Australia 5 What is the bigger picture? 4 MEASURE OF DISEASE ?? 1960s 1970s 1980s 1990s 2000s CALENDAR PERIOD Incidence rate Five-year relative survival Mortality 4

5 Age-standardised incidence rate An overall increasing in Mesothelioma incidence over time Age-standardised incidence rate per 100,000 (persons) 1960s 1970s 1980s 1990s 2000s Calendar period of diagnosis Safe Work Australia 2012 Leigh 1991 AIHW AACR 2006 Coates 1991 AMR and Safe Work Australia Leigh et al 1991 Leigh et al

6 What is the AMR? National registry of Malignant Total new cases Mesothelioma (MM) Incidence and mortality information Asbestos exposure data from consenting patients

7 Aims of the AMR To monitor the MM epidemic in Australia To monitor patterns of occupational and environmental exposure of patients To assist in preventing MM in the future

8 Who is involved? Safe Work Australia State and Territory Cancer Registries State and Territory Cancer Registries

9 Data collection Incidence and mortality from State and Territory Cancer Registries patients diagnosed from 1 July 2010 onwards Asbestos exposure directly from patients occupational and environmental exposure postal questionnaire and telephone interview

10 AMR Data Flow

11 Asbestos Exposure Information Collection

12 AMR registry data used for : Annual report Incidence and trends (national/state/territory) Age standardised & age specific rates Asbestos exposure in the past (occupation/ environment) Survival rates of MM patients Research & Publications

13 AMR data, 2011 At 15 August 2012, 612 diagnoses of MM reported to the Registry Rate of 2.7 per 100,000 population Males accounted for 85% of notified cases 79% of patients were aged 65 years or over

14 New cases of MM by age-group and sex, 2011

15 Malignant Mesothelioma, 2011 Most common sybtype: epithelioid subtype (44%) Most common location: pleura (92%) 307 deaths among patients diagnosed in 2011 (50%) In 90% of cases MM was the cause of death

16 Asbestos Exposure, 2011 Of 87 patients for whom asbestos exposure was assessed: 6 (7%) neither occupational nor non-occupational exposure 14 (16%) occupational exposure/s only 35 (40%) both occupational and non-occupational exposures 32 (37%) non-occupational exposure/s only

17 Asbestos Exposure, 2011 Job types with highest exposure likelihood: 1. Construction and building trades 2. Electrical and related trades Most common circumstances of nonoccupational exposure: 1. Home renovation-related activities 2. Car maintenance

18 Assistance of Australian Clinicians needed! To confirm patients eligibility for asbestos exposure questionnaire/interview Diagnosis of MM (after 1st July 2010) Physically / mentally able to complete a questionnaire Able to participate in a telephone interview (10 30 mins) Aware of their diagnosis Life expectancy of at least 2 3 months To encourage patient participation

19 Consent in NSW, Vic, Tas, ACT Opt-out clinician consent for recruitment for the AMR. If no response is received from the Clinician after 3 4 weeks, consent is assumed and patients are invited to participate in the asbestos exposure collection process. Clinicians should respond before this time if their patient is unsuitable for recruitment, so the patient will not be contacted.

20 Consent in Qld, WA, SA, NT Clinician consent is essential. If no response is received from the clinician, patients cannot be invited to participate in the asbestos exposure data collection process.

21 Sample Clinician Consent Forms

22 Why participation should be encouraged? Building a representative dataset Confirmation of relationship between (sources/types of) asbestos exposure and MM will assist in more adequate preventive measures

23 For more information Website: Telephone: