Building Local Capacity for Childhood Cancer Registration: Real-World Examples

PURPOSE: The International Agency for Research on Cancer and St Jude Children's Research Hospital established Targeting Childhood Cancer through the Global Initiative for Cancer Registry Development, a collaboration to accelerate change in childhood cancer registration in selected countries. We summarize the overall situation of the first 5-year implementation period highlighting key commonalities and challenges encountered. METHODS: Following the Global Initiative for Cancer Registry Development model, Georgia, Mexico, South Africa, and Vietnam were selected as implementation sites. We established a team per country, assessed the general and childhood cancer registration situation, and implemented targeted support via online meetings and site visits. Multimodal situational assessments were organized in four domains: Context, Governance, Procedures, and Dissemination. Key challenges were identified in each domain and mapped to critical attributes for evaluating surveillance systems. RESULTS: The scope, modalities, and coverage of cancer registration across countries vary in important ways; only South Africa has a specific childhood cancer registry. Not all registries in the four countries included nonmalignant tumors of the CNS, reported cancers using the childhood cancer-specific system International Childhood Cancer Classification third edition, or reported any survival information. Common challenges identified in all four countries included irregular financial support, instability in personnel, and difficulties in access and data sharing; none had an advisory committee. These challenges affect sustainability and data quality. CONCLUSION: Partnerships are valuable to accelerate change but take time to consolidate before impact is observed. Childhood cancer surveillance needs definitive support as a key component of the WHO Global Initiative for Childhood Cancer.