Background.
Europe is undergoing a transformation in the generation, sharing, and use of health data, driven by the European Health Data Space (EHDS), digitalization, data linkage, and advances in artificial intelligence. To measure the progress and impact of Europe’s Beating Cancer Plan and steer policies, we need representative, accurate, reliable, and timely population-based cancer data. For decades, population-based cancer registries (PBCRs) have provided this backbone of cancer control, yet their role remains insufficiently understood and under-supported. The newly launched Joint Action CancerWatch (2025–2028) aims to improve the quality and timeliness of PBCR data feeding into the European Cancer Information System (ECIS). A key component of this effort is to strengthen PBCR visibility, recognition, and sustainability to ensure impact in cancer control.
Objectives.
(1) To familiarize diverse stakeholders with PBCR operations, functions, expertise, and contributions to surveillance and cancer control; and (2) to start characterizing the sustainability capacity of European PBCRs and describe key barriers and opportunities.
Methods.
Using data from two surveys (i) the 2022 Union for International Cancer Control (UICC) TNM Prognostic Factors Committee Survey and (ii) the Sustainability Module of the 2025 CancerWatch Survey, we describe frequent barriers and facilitators reported by European PBCRs. We develop accessible, stakeholder-oriented infographics to illustrate how PBCRs operate and why they are indispensable to cancer surveillance and policy, highlighting current bottlenecks and future opportunities arising from digital technologies and data-sharing transformations in Europe. We also start to characterize their current situation according to the Sustainability Capacity for Health Programs Model, which defines eight core domains (funding stability, partnerships, organizational capacity, program evaluation, program adaptation, communications, environmental support, and strategic planning).
Results.
The IUCC survey was sent to 64 European PBCRs, of which 45 from 24 countries responded. Only 40% anticipated development or expansion within the next years. The most frequently reported barriers included shortages of human resources (56%), funding constraints (53%), challenges related to data protection and privacy regulations (36%), and missing information from data sources (36%). Among the registries planning to expand, the majority were expecting to incorporate techniques to improve timeliness (94%), new or updated tools for data extraction (83%), and additional information collected (78%). Preliminary results from the CancerWatch survey sent to all European PBCRs, combined with stakeholder interviews and literature review, showcase the variability in the sustainability capacity of European PCBRs overall and in specific capacity domains.
Conclusions/Implications for practice or policy.
Urgent action is needed to strengthen the structures and processes of PBCRs. This includes securing resources, maintaining high-quality core activities, and harnessing new technological opportunities—such as AI-assisted processes and automated data extraction. These steps are crucial to ensure reliable cancer control, especially in the context of rising cancer incidence and increasing pressure on healthcare systems. Europe cannot afford inaccurate, outdated, or fragmented population-based cancer data. Ensuring the sustainability and resilience of PBCRs requires coordinated support from policymakers, healthcare providers, researchers, and patient communities.
Funding: EU Joint Action CancerWatch (grant number 101219450)