ArticleESMO real world data and digital oncology2026
Extended cancer registry data for real-world evidence in bladder cancer: an update on the Prospective Bladder Cancer Infrastructure.
Article in ESMO real world data and digital oncology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Authors and funding
12 authors.
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Abstract
Background: To advance clinical research and innovation in bladder cancer care, the Dutch Prospective Bladder Cancer Infrastructure (ProBCI) was established as a nationwide platform and has now been operational for 5 years. Materials and methods: ProBCI is a population-based cohort including all patients diagnosed since 2020 with high-risk non-muscle-invasive bladder cancer (HR-NMIBC), muscle-invasive bladder cancer (MIBC), or metastatic bladder cancer (mBC) in the Netherlands, comprising a Full and an Active Cohort. The full cohort includes all eligible patients, from whom core (HR-NMIBC and MIBC) or extended (mBC) clinical data and follow-up are collected within the Netherlands Cancer Registry (NCR). The active cohort is a subset of the full cohort and consists of patients who provided informed consent for additional collection of patient-reported outcomes and biomaterials alongside detailed clinical data and follow-up until death. Results: As of 1 January 2026, the ProBCI full cohort comprised 20 737 patients. A growing number of participating hospitals (now 24) have been prospectively recruiting patients in the active cohort, with 1519 patients included to date. Among these, 73% completed baseline questionnaires (optional component) and 91% provided blood samples. Data from both cohorts are used by various studies including population characterizations, biomarker validation, and as concurrent control groups for single-arm trials. Conclusions: ProBCI has evolved into a uniquely positioned research infrastructure, with data collection embedded in the NCR, providing high-quality, high-granularity data and biomaterials to address diverse research questions. ProBCI demonstrates that nationwide collaboration can generate high-quality resources that support bladder cancer research and contribute to future improvements in patient outcomes.
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