Development of Implementation Strategies to Facilitate a Novel, Clinically-Relevant Hospital-Based Cancer Registry Network Across Ethiopia.

Authors

Emily R Sajda, Bethel Belayneh, Allison Yang, Atalay Mulu Fentie, Haileyesus Adam, Daniel Hailu, Abdulkadir Mohamedseid, Gashaw Arega, Mulugeta Yimer, Yalew Melkamu, Dirba Fufa, Mohammed Mustefa, Tadele Hailu, Mamude Dinikiye Ali, Megan Roberts, Adam Bernstein, Vanessa Ayer Miller, Kaitlyn Buhlinger, Benyam Muluneh

Published in

Cancer control : journal of the Moffitt Cancer Center. Volume 33. Pages 10732748261476827. Epub Aug 05, 2026.

Abstract

IntroductionCancer registries are essential for surveillance and cancer control, yet many pediatric oncology registries capture limited longitudinal clinical data and are not designed to support care continuity or active follow-up. In low- and middle-income settings, this limits the ability of registries to inform quality improvement, population decision support, and efforts to reduce treatment abandonment.MethodsWe used a modified implementation mapping approach to optimize Ethiopia's pediatric hospital-based cancer registry across five pediatric cancer centers. Clinicians, data clerks, social workers, and implementation scientists jointly refined registry workflows and co-developed the Pediatric Oncology Summary Sheet-Treatment and Follow-up (POSSh-TF), a structured tool designed to capture treatment delivery, modifications, and longitudinal follow-up data beyond minimum WHO-IARC recommendations. Iterative workflow analyses were conducted to align documentation, data entry, and reporting processes with routine clinical care and priorities outlined in Ethiopia's National Cancer Control Plan.ResultsWe identified the following key gaps to registry implementation including (1) variability across sites in available resources, (2) workload barriers preventing completion at every patient visit, and (3) variability in proposed workflow options across institutions. In order to mitigate these barriers, we designed concrete implementation strategies including: (1) partnership with the non-profit organization The Aslan Project to support the initiative, (2) standardized pre-defined workflows and SOPs to facilitate longitudinal data capture, and (3) site-embedded registry personnel with targeted training to improve data collection.ConclusionsCollaborative optimization of pediatric oncology registries can extend their function beyond surveillance to support cancer control, quality monitoring, and patient-centered follow-up. The POSSh-TF and associated workflows provide a scalable model for leveraging registry data to strengthen continuity of care and population-level decision support in resource-constrained settings.

PMID:
42552987
Bibliographic data and abstract were imported from PubMed on 05 Aug 2026.

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