Childhood Cancer Data Initiative Annual Symposium (Abstract Registration): Submission #70

Abstract Submission for Poster Presentation
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Abstract Title:: Pediatric Cancer Registries and Data Systems in Sub-Saharan Africa: A Scoping Review of Coverage, Interoperability, and Data-Sharing Readiness.
Abstract::
Background
Pediatric cancer registries are essential for surveillance, outcomes research, health-system planning, and participation in collaborative data ecosystems.However, readiness of existing systems in sub-Saharan Africa (SSA) for sustainable cross-institutional data sharing remains unclear.

Aim

To map pediatric cancer registries and data systems in SSA and assess their coverage,data elements and standardization,interoperability,governance,and readiness for sustainable cross-institutional data sharing.

Methods
Following PRISMA-ScR principles, bibliographic and supplementary sources were systematically searched through August 2026 for primary studies describing patient-level pediatric cancer registries, databases, or registry-development initiatives in SSA. Eighteen eligible publications were charted across predefined domains: coverage/case ascertainment, data elements/standardization, interoperability, governance/data access, institutional capacity, and sustainability.Interoperability was assessed across semantic, technical, organizational, and patient-linkage dimensions.

Results

Population- and hospital-based registries, multicountry networks, and prospective digital databases were identified. ICCC-3, ICD-O-3, and Toronto staging demonstrated semantic standardization, including multicountry implementation (Liu et al., 2023; Mallon et al., 2023). Selected systems supported multicentre data aggregation, staging, longitudinal follow-up, survival, and research-ready clinical and socioeconomic data (Mallon et al., 2022; Parkin et al., 2021; Davidson et al., 2022). However, population coverage was uneven, while patient-level linkage and technical interoperability across clinical, pathology, registry, and national information systems were limited or insufficiently reported. Governance, workforce capacity, and sustainable financing were heterogeneous.

Conclusion

SSA has important foundations for a shareable pediatric cancer data ecosystem, but readiness remains uneven. Priorities include common data elements, patient-level linkage, technical interoperability, longitudinal outcome capture, and governed cross-institutional sharing to strengthen the contribution of SSA data to collaborative ecosystems such as CCDI.

Authors::
1. First Name: Korede
   Middle Initial: T
   Last Name: Akindele
   Degree(s): MSc
   Organization: The Dorcas Cancer Foundation
2. First Name: Adedayo
   Last Name: Joseph
   Organization: Medserve Luth Cancer Center
3. First Name: Fagbemide
   Last Name: Oluwafunmilayo
   Organization: Lagos University Teaching Hospital
4. First Name: Atolagbe
   Last Name: Oluwakemi
   Organization: The Dorcas Cancer Foundation
5. First Name: Adeseye
   Last Name: Akinsete
   Organization: Nigeria Society of Pediatric Oncology

Presenting Author:: Korede Akindele
Institution:: The Dorcas Cancer Foundation
Email Address:: araireakindele@gmail.com