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RARECARE project Proposal for improving data quality on rare cancers with high priority

RARECARE project Proposal for improving data quality on rare cancers with high priority Granada , March 25 th 2009 Andalusian School of Public Health. Rare tumours with high priority. short list. Short list. Mesothelioma Liver angiosarcoma Sarcomas Tumors of oral cavity

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RARECARE project Proposal for improving data quality on rare cancers with high priority

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  1. RARECARE project Proposal for improving data quality on rare cancers with high priority Granada, March 25th 2009 Andalusian School of Public Health

  2. Rare tumours with high priority short list

  3. Short list • Mesothelioma • Liver angiosarcoma • Sarcomas • Tumors of oral cavity • SNC tumours • Germ cell tumours • Leukemia • Endocrine tumours Primary prevention Diagnostic accuracy Secondary prevention Quality of care Data quality

  4. Mesothelioma Quality of follow-up (high lethality) Accuracy of diagnosis

  5. Mesothelioma, 3-year relative survival by registry

  6. Angiosarcoma of liver Anne Marie will refer Angiosarcoma of liver Source: Lancet Oncol. 2006 Feb;7(2):132-40

  7. Sarcoma % of sarcoma NOS

  8. % Sarcoma NOS by registry

  9. Tumors of oral cavity stage at diagnosis

  10. CNS tumours Benign/borderline/malignant ICD-O changes(i.e pilocytic astrocytoma) Cultural attitudes of pathologists (high variation in survival) Quality of follow-up (high lethality) Ryszard showed us

  11. Brain tumours5-year survival in Europe From 27% to 16% >20% (Finland, Iceland, Norway, Ireland, Wales, Austria, Belgium, Germany, Switzerland, Portugal) Source: Sant et al, EJC, 2008 19.7%

  12. Germ cell tumours Ovarian germ cell tumour

  13. Indicator of data quality Inconsistency in diagnosis & coding criteria Geographical variation in incidence

  14. Indicator of data qualityMV DCO Lost to f-u Source: Lancet Oncol. 2006 Feb;7(2):132-40

  15. Crude and standardised incidence rates; range of incidence across regions (ratio)

  16. Germ cell tumours % of morphology NOS among the relevant cancer sites

  17. leukaemia % of morphology NOS

  18. % of leukaemia NOS by registry (average 6%)

  19. Conclusion • Short list (agreement) • Data quality analysis on information already available to registries (ICD-O codes, incidence and survival analyses) • Check of morphology codes NOS and its impact on incidence and survival

  20. Further clinical information to be collected Stage Treatment Hospital for diagnosis and treatment Biomarkers? Prognostic factors? Other?

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