Registration of Urothelial Tumours in Cancer Registries: How to Improve and Make It More Useful?

Due to the differences in the definition, criteria of inclusion and coding of urothelial tumours (UTs), data of different cancer registries (CRs) are not comparable. The aim of this work is to study current practices of registration of UT in the European CR of the GRELL countries in order to propose new registration rules to correctly describe incidence and survival of progressive tumours like UT. A questionnaire was sent to 91 CRs to assess whether non-invasive (NI)UT, multiple UTs, UTs occurring outside or before the operating period and time between UTs are currently considered in tumour recording and reporting. All participating CRs (n = 42) record a NI bladder UT in sole occurrence. In case of progressive bladder UT, 98% of the CRs record at least one NIUT but 19% don’t record the invasive progression. 17% of the CRs don’t record an invasive pelvic tumour that occurs after a NI bladder UT. 19% of the CRs don’t record an invasive bladder UT that followed a NI tumour occurring outside the zone or period of time. The recording of two synchronous UTs is carried out with a grouping topography for 36% of the CRs. The same analysis conducted on the reporting of the incidence of UT also shows heterogeneity. We conclude that there is an urgent need to define clear rules for the registration of UT.