European Cancer Registry Mapping Reveals Significant Gaps in Real-World Data Readiness

V Zadnik, A Duratović Konjević, M Jurtela, et al.

Summary: A cross-sectional survey conducted in early 2026 under the EU Joint Action CancerWatch mapped 175 population-based cancer registries (PBCRs) across 45 European countries, achieving a 91.1% response rate. The survey—the first of its kind at this scale—assessed coverage, data timeliness, digital infrastructure, and readiness to generate real-world data. Key findings include incomplete population coverage in some regions, only 69% of countries providing incidence data within two years, substantial variability in digital maturity, and roughly one-third of registries reporting limited or no awareness of European Health Data Space (EHDS) requirements.

Why it matters: Population-based registries are foundational infrastructure for epidemiological surveillance, health policy, and increasingly for RWD generation to support regulatory and clinical decision-making. Identifying where European registries fall short in timeliness, interoperability, and EHDS alignment is a necessary precondition for coordinated improvement. The survey's scope—over 700 items across 192 invited registries—provides an unusually granular baseline that could meaningfully inform EU-level investment and harmonization efforts. For rare diseases more broadly, where cross-national data pooling is essential to achieve adequate sample sizes, these gaps are particularly consequential.

Expert perspective: The study's principal strength is its exceptional response rate (91.1%) and breadth, which lend genuine credibility to the landscape portrait it paints. Cross-sectional self-reported surveys, however, are inherently limited: registry staff self-assessed their own digital maturity and EHDS awareness, introducing social-desirability bias and variable interpretation of survey items. The 700-item questionnaire also raises questions about respondent fatigue and data consistency across national contexts with differing definitions of "automated infrastructure" or "data linkage." That said, the directional findings—fragmented data exchange, lagging timeliness, uneven digital capacity—are plausible and consistent with what observers of European health data infrastructure have long suspected.

The 31% of registries reporting no or limited EHDS awareness is striking and arguably the most actionable finding, given that EHDS implementation timelines are not waiting for registries to catch up. The authors appropriately call for standardized, publicly accessible registry inventories and coordinated European action rather than overstating causal conclusions. This is honest and useful work: not a trial, not RWE in itself, but the kind of systematic baseline assessment without which intelligent infrastructure investment is impossible. The findings have direct relevance beyond the oncology context—rare disease registries face analogous heterogeneity in coverage and interoperability across European member states.

Relevance: Registry and Real-World Data Methods

Source: https://pubmed.ncbi.nlm.nih.gov/42830857/

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