Enhancing Cancer Registry Accuracy Through Data Validation and Follow-Up in Resource-Limited Settings

Abstract Introduction Cancer registries are vital for cancer surveillance and research. Accurate, timely updates are essential to track outcomes, especially where documentation gaps challenge completeness. This study shows the importance of structured data validation and follow-up policies at Shefa Al-Orman Hospital Cancer Registry (SOH-CR) to improve survival analysis and patient tracking. Methods A retrospective cohort study reviewed 20,374 cases (November 2022-November 2024). Validation was done monthly by cancer registrars, following ICD-O3 and SEER guidelines, including prior unvalidated cases. A follow-up policy updated patient status and mortality. Patients were contacted if absent for six months after outpatient visits or one month after hospital admissions. A team verified survival status with patients or families. Shapiro normality and Wilcoxon Signed Ranks tests compared data before and after validation. Results Significant changes were observed in cancer type distribution after validation (p = 0.024). Breast cancer cases increased from 4,609(22.6%) to 4,907(24.1%), digestive system from 3,980(19.5%) to 4,605(22.6%). Lymphoma and respiratory system cases rose from 885 (4.3%) and 1,343(6.6%) to 1,269(6.2%) and 1,648(8.1%), respectively. Miscellaneous cases decreased from 801(3.9%) to 579(2.8%), and Other from 2,325(11.4%) to 185(0.9%). After applying the follow-up policy, 4,710 deaths were updated. Lost to follow-up and confirmed deaths decreased: 808 (338 deceased) in December 2022, 504 (202 deceased) in January 2023, and 427 (126 deceased) in February 2023. By December 2024-February 2025, numbers dropped to 346 (101deceased), 169 (30deceased), and 145 (28deceased). Conclusions The implementation of structured data validation and follow-up policies significantly improved SOH-CR data accuracy, enhancing cancer classification, mortality reporting, and survival tracking. This initiative offers a model for improving cancer registries in resource-limited settings. Key messages • Implementing structured data validation and follow-up improves the completeness and accuracy of cancer registry data, enhancing survival analysis and outcome tracking in resource-limited settings. • This approach provides a practical model for strengthening cancer surveillance systems, contributing to better cancer care, informed public health planning, and improved cancer control strategies.