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

Area of Science:

• Global Health
• Cancer Epidemiology
• Public Health Surveillance

Background:

• The Global Initiative for Cancer Registry Development (GICR) was established by the International Agency for Research on Cancer (IARC) and St. Jude Children's Research Hospital.
• Targeting Childhood Cancer is a GICR collaboration focused on improving childhood cancer registration in select countries.

Purpose of the Study:

• To summarize the first five years of the Targeting Childhood Cancer initiative.
• To highlight common challenges and successes in childhood cancer registration across implementation sites.

Main Methods:

• Four countries (Georgia, Mexico, South Africa, Vietnam) were selected based on the GICR model.
• Multimodal situational assessments were conducted in four domains: Context, Governance, Procedures, and Dissemination.
• Support was provided through online meetings and site visits to address identified challenges.

Main Results:

• Cancer registration varied significantly across countries; only South Africa has a dedicated childhood cancer registry.
• Inconsistencies were found in reporting nonmalignant CNS tumors, use of the International Classification of Childhood Cancer (ICCC-3), and survival data.
• Common challenges included unstable funding, personnel turnover, and data access/sharing issues, impacting sustainability and data quality.

Conclusions:

• Collaborative partnerships are essential for driving change in cancer registration but require time to mature.
• Robust and sustained support for childhood cancer surveillance is critical, aligning with the WHO Global Initiative for Childhood Cancer.