Assessing real-world representativeness of prospective registry cohorts in oncology: insights from patients with esophagogastric cancer.

This study aimed to explore the real-world representativeness of a prospective registry cohort with active accrual in oncology, applying a representativeness metric that is novel to health care. We used data from the Prospective Observational Cohort Study of Esophageal-Gastric Cancer Patients (POCOP) registry and from the population-based Netherlands Cancer Registry (NCR). We used Representativeness-indicators (R-indicators) and overall survival to investigate the degree to which the POCOP cohort and clinically relevant subgroups were a representative sample compared to the NCR database. Calibration using inverse propensity score weighting was applied to correct differences between POCOP and NCR. The R-indicator of the entire POCOP registry was 0.72 95% confidence interval [0.71, 0.73]. Representativeness of palliative patients was higher than that of potentially curable patients (R-indicator 0.88 [0.85, 0.90] and 0.70 [0.68, 0.71], respectively). Stratification to clinically relevant subgroups based on treatment resulted in higher R-indicators of the respective subgroups. Both after stratification and calibration weighting survival estimates in the POCOP registry were more similar to that in the NCR population. This study demonstrated the assessment of real-world representativeness of patients who participated in a prospective registry cohort and showed that real-world representativeness improved when the variability in treatment was accounted for.

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Copyright © 2023 The Author(s). Published by Elsevier Inc. All rights reserved.

Déclaration de conflit d'intérêts

Declaration of competing interest MS has served as a consultant for BMS and Lilly. NHM has served as a consultant for BMS, Merck, Lilly, Astra Zeneca and Servier. RV reports grants from BMS and has served as a consultant for Daiichi Sankyo. HvL has served as a consultant for BMS, Dragonfly, Lilly, Merck, Nordic Pharma and Servier and has received research funding and/or medication supply from Bayer, BMS, Celgene, Janssen, Incyte, Lilly, Merck, Nordic Pharma, Nordic, Philips, Roche and Servier. SCK, JB, TK, CJvdZ, EAK, LvB, and BRK have no disclosures.