Impact of corrections on RARECARE indicators Preliminary analysis Riccardo Capocaccia

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

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%

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

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%

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%

Revision by cohort of incidence

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 -

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%

Revision by cohort of incidence

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

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

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