Development of Implementation Strategies to Facilitate a Novel, Clinically-Relevant Hospital-Based Cancer Registry Network Across Ethiopia
Year: 2026
Type: article
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.
Source: Cancer Control
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
Language: English
Subfield: General Health Professions
Field: Health Professions
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $2,650
Funders: Science, Mathematics, And Research For Transformation Scholarship Program, Support for Pioneering Research Initiated by the Next Generation, Michael J. Fox Foundation for Parkinson's Research, Bill and Melinda Gates Foundation, Robert Wood Johnson Foundation, Conrad N. Hilton Foundation, Welch Foundation, Camille and Henry Dreyfus Foundation, Research to Prevent Blindness, Amgen, Dow Chemical Company, Alexander von Humboldt-Stiftung, Vanderbilt University, New York University, Natural Science Foundation of Shanghai, Carl-Zeiss-Stiftung, Fundación Ramón Areces, Suomen Lääketieteen Säätiö, Kreftforeningen, Iowa State University, Royal Society for the Prevention of Cruelty to Animals, Wellcome Trust, “la Caixa” Foundation, New York University Abu Dhabi, Ministerio de Ciencia, Innovación y Universidades, POSCO TJ Park Foundation, Faraday Institution, Ohio Supercomputer Center, Animal Welfare Foundation, Fonds der Chemischen Industrie, Instituto D'Or de Pesquisa e Ensino, National Institute for Health and Care Research, Leverhulme Trust, Department of Health and Social Care, University of Sheffield, Commonwealth Scientific and Industrial Research Organisation, National University of Singapore, Ministry of Education - Singapore, Deutsche Forschungsgemeinschaft, Ministry of Education, Culture, Sports, Science and Technology, Schweizerischer Nationalfonds zur Förderung der Wissenschaftlichen Forschung, Murdoch University, Canada Research Chairs, National Natural Science Foundation of China, Coordenação de Aperfeiçoamento de Pessoal de Nível Superior, Academy of Finland, Chinese Academy of Sciences, Austrian Science Fund, Inha University, Ministry of Science and Technology of the People's Republic of China, Research Grants Council, University Grants Committee, Eusko Jaurlaritza, Ministerio de Economía y Competitividad, Fudan University, Ministero dell’Istruzione, dell’Università e della Ricerca, Euskal Herriko Unibertsitatea, Lundbeckfonden, Israel Science Foundation, Juho Vainion Säätiö, Max-Planck-Gesellschaft, Narodowe Centrum Nauki, Javna Agencija za Raziskovalno Dejavnost RS, Vetenskapsrådet, Natural Science Foundation of Jiangxi Province, China Scholarship Council, Universidade de Macau, Ministerio de Ciencia e Innovación, Norges Forskningsråd, Gottfried und Julia Bangerter-Rhyner-Stiftung, Medizinische Universität Wien, Université de Fribourg, Hokkaido University, Fundo para o Desenvolvimento das Ciências e da Tecnologia, Campus France, Ministero degli Affari Esteri e della Cooperazione Internazionale, Uppsala Universitet, Kempestiftelserna, Università degli Studi di Ferrara, Natural Science Foundation of Shandong Province, Russell Berrie Nanotechnology Institute, Technion-Israel Institute of Technology, Addis Ababa University, Novo Nordisk Fonden, Gobierno de Aragón, Zarqa University, Universidade Federal do Estado do Rio de Janeiro, Anhui Normal University, Shanxi Agricultural University, Kementerian Kesihatan Malaysia, Ministry of Science and ICT, South Korea, Narodowa Agencja Wymiany Akademickiej, Tamkeen, Försäkringskassan, Shanghai Pudong New Area Health Commission, Seqirus, National Institutes of Health, National Institute of Food and Agriculture, National Nuclear Security Administration, Merck Sharp and Dohme, Horizon 2020 Framework Programme, Bayer, United Kingdom, HORIZON EUROPE Framework Programme, Natural Sciences and Engineering Research Council of Canada, Engineering and Physical Sciences Research Council, Australian Research Council, Japan Society for the Promotion of Science, Fundação para a Ciência e a Tecnologia, Public Health Research Programme, Japan Science and Technology Agency, Helse Sør-Øst RHF, European Regional Development Fund, Elitenetzwerk Bayern, Planning and Budgeting Committee of the Council for Higher Education of Israel, Agencia Estatal de Investigación, National Key Research and Development Program of China, School for Public Health Research, Humanities and Social Science Fund of Ministry of Education of China, National College Students Innovation and Entrepreneurship Training Program, Special Fund Project for Science and Technology Innovation Strategy of Guangdong Province, Shandong Provincial Postdoctoral Science Foundation, Basic and Applied Basic Research Foundation of Guangdong Province, National Eye Institute, National Institute of General Medical Sciences, National Institute of Diabetes and Digestive and Kidney Diseases, National Institute of Neurological Disorders and Stroke, National Institute of Environmental Health Sciences, Division of Chemistry, Basic Energy Sciences, Core Research for Evolutional Science and Technology, H2020 European Research Council, H2020 Future and Emerging Technologies, HORIZON EUROPE Marie Sklodowska-Curie Actions, HORIZON EUROPE European Research Council, Natural Science Foundation of Zhejiang Province, Advanced Light Source, National Science Foundation Graduate Research Fellowship Program, European Innovation Council and Small and Medium-sized Enterprises Executive Agency, Ayuntamiento de Madrid, NextGenerationEU, Joyce and Don Massey Family Foundation
OpenAlex ID: W7172527226