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

serial: '70'
sid: '191424'
uuid: 40d91cb5-e551-4c22-8fdb-dd8b1340c1d3
uri: /nci/ccdisymposium/abstract
created: '1787177073'
completed: '1787181333'
changed: '1787181333'
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langcode: en
webform_id: ccdi_symposium_abstract
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entity_id: '2139'
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data:
  authors_:
    - add_author_degree: MSc
      add_author_first_name: Korede
      add_author_last_name: Akindele
      add_author_middle: T
      add_author_organization: 'The Dorcas Cancer Foundation'
    - add_author_degree: ''
      add_author_first_name: Adedayo
      add_author_last_name: Joseph
      add_author_middle: ''
      add_author_organization: 'Medserve Luth Cancer Center'
    - add_author_degree: ''
      add_author_first_name: Fagbemide
      add_author_last_name: Oluwafunmilayo
      add_author_middle: ''
      add_author_organization: 'Lagos University Teaching Hospital'
    - add_author_degree: ''
      add_author_first_name: Atolagbe
      add_author_last_name: Oluwakemi
      add_author_middle: ''
      add_author_organization: 'The Dorcas Cancer Foundation'
    - add_author_degree: ''
      add_author_first_name: Adeseye
      add_author_last_name: Akinsete
      add_author_middle: ''
      add_author_organization: 'Nigeria Society of Pediatric Oncology'
  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.
  abstract_title_: 'Pediatric Cancer Registries and Data Systems in Sub-Saharan Africa: A Scoping Review of Coverage, Interoperability, and Data-Sharing Readiness.'
  email_address_: araireakindele@gmail.com
  institution_: 'The Dorcas Cancer Foundation'
  presenting_author_: 'Korede Akindele'