1. RARECARE project Proposal for improving data quality on rare cancers with high priority Granada, March 25 th 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. Mesothelioma, 3-year relative survival by registry

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

8. Sarcoma % of sarcoma NOS

9. % Sarcoma NOS by registry by registry

10. % Sarcoma NOS by registry by registry

11. Tumors of oral cavity stage at diagnosis

12. % M+ by registry Fare con registri di rarecare

13. 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

14. Brain tumours 5-year survival in Europe From 27% to 16% >20% (Finland, Iceland, Norway, Ireland, Wales, Austria, Belgium, Germany, Switzerland, Portugal) 19.7% Source: Sant et al, EJC, 2008

15. Germ cell tumours Ovarian germ cell tumour

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

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

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

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

21. leukaemia % of morphology NOS

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

23. 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

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