Academic Journal
Database completeness and evaluation of potential barriers and facilitators of data collection in the national pediatric cancer registry in Ethiopia.
| Τίτλος: | Database completeness and evaluation of potential barriers and facilitators of data collection in the national pediatric cancer registry in Ethiopia. |
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| Συγγραφείς: | Lavieri C; Campbell University, Buies Creek, NC, United States., Penn-Henry N; Campbell University, Buies Creek, NC, United States., Bash A; Campbell University, Buies Creek, NC, United States., Fentie AM; School of Pharmacy, College of Health Sciences, Addis Ababa University, Addis Ababa, Ethiopia., Bernstein A; University of North Carolina at Chapel Hill, Chapel Hill, NC, United States., Arega G; Pediatrics Hematology and Oncology Unit, Department of Pediatrics and Child Health, Addis Ababa University, Addis Ababa, Ethiopia., Hailu D; Pediatrics Hematology and Oncology Unit, Department of Pediatrics and Child Health, Addis Ababa University, Addis Ababa, Ethiopia., Adam H; Pediatrics Hematology and Oncology Unit, Department of Pediatrics and Child Health, Addis Ababa University, Addis Ababa, Ethiopia., Mohammed A; Pediatrics Hematology and Oncology Unit, Department of Pediatrics and Child Health, Addis Ababa University, Addis Ababa, Ethiopia., Buhlinger K; University of North Carolina at Chapel Hill, Chapel Hill, NC, United States., Muluneh B; University of North Carolina at Chapel Hill, Chapel Hill, NC, United States., Miller VA; Campbell University, Buies Creek, NC, United States. Electronic address: vayermiller@campbell.edu. |
| Πηγή: | Journal of cancer policy [J Cancer Policy] 2026 Jun; Vol. 48, pp. 100729. Date of Electronic Publication: 2026 Mar 01. |
| Τύπος έκδοσης: | Journal Article |
| Γλώσσα: | English |
| Στοιχεία περιοδικού: | Publisher: Elsevier Ltd Country of Publication: England NLM ID: 101639933 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 2213-5383 (Electronic) Linking ISSN: 22135383 NLM ISO Abbreviation: J Cancer Policy Subsets: MEDLINE |
| Imprint Name(s): | Original Publication: [London] : Elsevier Ltd, [2013]- |
| Ιατρικοί όροι (MeSH): | Registries*/statistics & numerical data , Registries*/standards , Neoplasms*/epidemiology , Data Collection*/methods , Data Collection*/standards , Databases, Factual*/standards, Ethiopia/epidemiology ; Humans ; Child ; Female ; Data Accuracy |
| Περίληψη: | Pediatric cancer remains a leading cause of death among children in low- and middle-income countries. Hospital based cancer registries are essential to inform interventions to improve outcomes. Ethiopia launched its first hospital-based national pediatric cancer registry at five hospitals in 2022. The registry was maintained in REDCap with continuous progressive updates to improve data quality. This mixed-methods study evaluated data completeness and identified barriers and facilitators to data collection and entry. Quantitative analysis involved a presence check of 522 medical records from one hospital, Tikur Anbessa Specialized Hospital. Qualitative analysis involved thematic coding of transcripts from two quarterly meetings. More than 90% of the patient records considered "complete" with a response for 82 of 107 data variables and 73 of 86 required data variables. A breakdown of all the variables showed 1 variable had 0-9% of the records complete, 8 variables had 10-49% of the records complete, and 16 variables had 50-89% of the records complete. Five themes emerged from the qualitative analysis: tool usability, provider responsibility, logistical barriers, training needs, and gaps in specificity. Training sessions improved data quality and completeness. The increase in specificity concerns suggests growing user engagement and a desire for registry refinement. Ethiopia's pediatric cancer registry has demonstrated the feasibility and effectiveness of establishing such systems in low- and middle-income countries. Sustainability requires continuous training, strong stakeholder engagement, and active national and international collaboration. Ongoing customization of the registry to local contexts is essential for long-term scalability and integration into the national health information system. (Copyright © 2026 The Authors. Published by Elsevier Ltd.. All rights reserved.) |
| Competing Interests: | Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper. |
| Contributed Indexing: | Keywords: Bioinformatics; Ethiopia; Hospital Based Cancer Registry; Implementation Science; Pediatric Cancer Registry; Pharmacoepidemiology; Translational Medicine |
| Entry Date(s): | Date Created: 20260303 Date Completed: 20260710 Latest Revision: 20260710 |
| Update Code: | 20260711 |
| DOI: | 10.1016/j.jcpo.2026.100729 |
| PMID: | 41775332 |
| Βάση Δεδομένων: | MEDLINE |
| ISSN: | 2213-5383 |
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| DOI: | 10.1016/j.jcpo.2026.100729 |