V. Zadnik, A. Duratović Konjević, M. Jurtela, K. Lokar, N. Bric, T. Zagar, D. Petrova, M.J. Bento, M.D. Chirlaque, D. Coza, L. Daubisse-Marliac, P. Delafosse, G. Geleijnse, S. Guzzinati, M. Hackl, T. Hartz, N. Meuter, D. Murray, K. Staehelin, L. Taraszkiewicz, G. Ursin, M. Trojanowski.
ESMO Real World Data and Digital Oncology,Volume 14,2026,100785,ISSN 2949-8201.
Abstract
Background
Population-based cancer registries (PBCRs) are essential for cancer surveillance and control yet their capacity and coverage vary across Europe. This study presents the first descriptive results of a survey mapping European PBCRs, with a particular focus on registry coverage, data availability, timeliness, and selected aspects of readiness for real-world data (RWD) generation.
Materials and methods
A cross-sectional survey was conducted in early 2026 within European Union Joint Action CancerWatch. A comprehensive questionnaire (>700 items, 15 sections) was distributed to 192 European PBCRs across 45 countries, covering organisational, legal, and technical aspects.
Results
A total of 175 (91.1%) PBCRs completed the survey. Of these, 151 were general registries collecting data for all cancer sites and age groups, representing 39 countries. Most countries have national registries or integrate data from multiple regional registries into a national dataset; however, population coverage remains incomplete in some regions. Data timeliness could be improved, as only 69% of countries provide cancer incidence data within 2 years. European PBCRs show substantial variability in digital infrastructure and data integration capacity, ranging from basic data linkage systems to partially or fully automated infrastructures. Over 60% operate within fragmented data exchange systems and one-third reported no/limited awareness of European Health Data Space (EHDS) requirements.
Conclusions
This survey provides the first comprehensive overview of European PBCR coverage, data availability, timeliness, and selected organisational and technical characteristics relevant to RWD generation. Although European PBCRs provide broad population coverage, they remain heterogeneous in digital maturity, data integration capacity, and timeliness, limiting their ability to support the generation of RWD and to meet EHDS requirements. Strengthened infrastructure, interoperability, and coordinated European action are needed, alongside a standardised, publicly accessible PBCR inventory.