Reporting of National Cancer Registry statistics in Europe: a scoping review

Abstract

Background Population-based cancer registries (PBCRs) play an important role in national cancer control programs by providing data for cancer statistics. The European Network of Cancer Registries (ENCR) aims to promote the impact and use of European PBCRs and umbrella organizations (UOs). This study maps the reporting practices of European national PBCRs (NPBCRs) and UOs regarding the key statistical indicators: incidence, prevalence, and survival. Patients and methods The ENCR Members Contact List and Google.com were used to identify websites of all NPBCRs and UOs, which were screened for sources of evidence (SoEs). Using a predefined protocol, the SoEs were assessed for the reporting of incidence, prevalence, and survival, as well as the timeliness of reporting. A scoring rubric was used to assess data accessibility. Results Excluding microstates, at least one SoE was identified for 34 out of 45 European countries. In total, 60 SoEs containing nationwide statistics were found, mainly general cancer reports (n = 23) and dashboard tools (n = 20). Nationwide cancer incidence was reported in all 34 countries, whereas prevalence and survival were reported in approximately half of the SoEs. The time lag between publication year and most recently covered year ranged from 0 to 10 years (mean 2.69 years). The average accessibility score of SoEs was 7 out of 10 points. Conclusion This study highlights the heterogeneity in the reporting, accessibility, and timeliness of cancer statistics across European NPBCRs and UOs. Improving harmonization and reporting practices could enhance the value of cancer registry data for cancer control.