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Implementation of a National Pediatric Cancer Registry in Ethiopia: A systems ("A3") thinking approach
James B Collins I V1, Mandee Lines2, Callee Brooks2
1UNC Eshelman School of Pharmacy, University of North Carolina, Chapel Hill, North Carolina, United States of America.
Insights
Ethiopia launched its first pediatric cancer registry, improving data collection for cancer research. This initiative addresses a critical gap, enhancing care quality for children with cancer in the region.
Area of Science:
- Oncology
- Public Health
- Health Informatics
Background:
- Cancer registries are crucial for improving cancer care quality through data collection.
- Ethiopia previously lacked a pediatric cancer registry, hindering research and data-driven improvements.
- A significant gap existed in collecting essential patient demographics, diagnoses, and treatment data for pediatric cancer patients in Ethiopia.
Purpose of the Study:
- To establish Ethiopia's first pediatric hospital-based cancer registry.
- To identify and address barriers and facilitators for implementing a pediatric cancer registry.
- To develop an integrated data collection process for pediatric oncology.
Main Methods:
- Collaboration between Ethiopian pediatric cancer centers and University of North Carolina oncology clinicians and implementation scientists.
- Piloting a REDCap registry system to assess feasibility and identify challenges.
- Conducting workflow analyses and developing standard operating procedures for data collection.
Main Results:
- Identification of deficiencies in the existing data collection processes.
- Development of standardized operating procedures tailored for each cancer center.
- Successful launch of Ethiopia's first integrated, hospital-based pediatric cancer registry.
Conclusions:
- The implementation of a pediatric cancer registry in Ethiopia is feasible and essential.
- Standardized procedures and targeted training are key to successful registry implementation.
- This registry will facilitate vital research to improve pediatric cancer care in Ethiopia.
Abstract:
Cancer registries allow for the collection of key data associated with patient demographics, diagnoses, and treatments, making them an essential tool for research aimed to improve the quality of care in patients with cancer. Previously, a pediatric cancer registry did not exist in Ethiopia, and prevented the collection of such data. In order to address this gap, a group of oncology clinicians and implementation scientists from the University of North Carolina worked in collaboration with all five pediatric cancer centers within Ethiopia to identify barriers and facilitators associated with a piloted REDCap registry, provide necessary training, and perform workflow analyses to create one integrated process for a pediatric cancer registry. Based on these analyses, deficiencies in the current process were identified and standard operating procedures were developed for each cancer center to guide data collection. These advancements led to the launch of Ethiopia's first pediatric hospital based cancer registry.
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