1. Impact of corrections on RARECARE indicators Preliminary analysis Riccardo Capocaccia

2. Analysis 26,980 cases sent for revision to 36 registries
Several registries, not included in the RARECARE database, subsequently joined
Several registries revised only a subset of cases
Incidence and observed survival indicators were estimated from the original and the revised datasets
Only registries included in the database, and which revised each specific cancer were considered

3. Mesothelioma 3658 pleural mesotheliomas in participating registries
507 cases revised because survival > 2 year
24 cases removed: 5-yr survival = 54.2
692 pleural cancers revised
42 cases added : 5-yr survival = 0.0
Number of cases increased by + 3.6%

4. Mesothelioma Number of incident mesotheliomas: 3658
Incidence in participating registries: 1.35
5-yr survival in participating registries: 6.35
Hypothesis (A): all misclassified cases are in the subset of 507 cases revised
Incidence 1.36
5-yr survival 5.97
Hypothesis (B): the proportion of misclassification among all cases is the same of that in the revised subset
Incidence 1.40
5-yr survival 3.65

5. Liver angiosarcoma 82 cases of liver angiosarcoma sent for revision
all diagnoses confirmed
13 with survival > 1 years
survival information corrected in 9 cases
including all the 8 Austrian cases
Survival in Austria changed: from 27% to 24%

6. Sarcoma NOS and GIST 366 cases of GIST in participating registries
incidence: 0.11
5-yr survival: 61.6%
2980 cases of Sarcoma NOS sent for revision
108 new GIST cases found
corrected incidence: 0.14
corrected 5-yr survival: 74.6%

7. Revision by cohort of incidence

8. Chronic Myeloid Leukaemia NOS
A total of 2627 CML NOS cases revised
200 cases corrected to CML BCRABL +
46 cases already present in the database
same entity as CML NOS
26 cases corrected to CML BCRABL -

9. Atypical chronic myeloid leukemia BCRABL negative
6 cases in participating registries
20 cases added
3-year survival: 66.7%
corrected 3-yr survival: 32.0%

10. Revision by cohort of incidence

11. CNS cancers NOS 3861 cases of CNS NOS in participating registries
1503 sent for revision because surv > 1
564 revised
Main changes:
46 astrocytomas adding to 8864 cases in the same registries
6 oligodendrogliomas (adding to 577)
2 ependimomas (adding to 404)
Negligible impact on incidence and survival

12. Proportion of lost to FU and long-term relative survival: Colon & Rectum

13. Comments Quality control of site and morphology was effective
For many entities, indicators’ estimates are not dramatically affected ...
... with the exception of some rare cancers (GIST, CML subtypes) ...
... and mostly for the first years of ICDO-3
Follow-up revision is also important for many registries