Improving Quality and Timeliness of Cancer Registry Data feeding into the European Cancer Information System (ECIS) - WP6 e WP7

PI-Co-PI: Claudine Backes, WP 4 Leader, Director of the National Cancer Registry of Luxembourg. Head of the Cancer Epidemiology Group at the LIH. Member of the ENCR SC. 

Europe’s Beating Cancer Plan aims to better exploit data and digital technologies in research to understand and reduce the burden of cancer. Aggregated cancer data from the European Cancer Information System (ECIS) are essential to monitor, understand and support cancer policies and research. These data are provided by cancer registries of the European Network of Cancer Registries (ENCR). However, there is a strong need in Europe to harmonise population-based registry (PBCR) data for quality, completeness and timeliness. This joint action therefore aims to improve the quality and timeliness of registries, thanks to ECIS data.  

In particular, the Environmental Epidemiology structure will participate in WP4. 

The focus of WP4 will work to engage key regional, national and European stakeholders in CancerWatch in order to strengthen the position of PBCRs as an indispensable data resource and as European experts in cancer surveillance and control, conveying both the needs and challenges faced by PBCRs, and the unique contribution and opportunities they generate in terms of high-quality data and return on investment in cancer control. CancerWatch’s multi-level actions for sustainability will be reflected in the following WP4 deliverables: 

• The publication of a short and meaningful “Sustainability Agenda for PBCR in Europe” (in collaboration with WP1), with a focus on the value generated by PBCR and the role of different traditional and emerging stakeholders in the context of data sharing, technological innovation and the policy landscape in Europe. 

• The publication of a detailed “Sustainability Report” (in collaboration with all technical WPs) based on the main lessons learned from WP4 activities, focusing on the identification of sustainability elements at different levels.