The National Childhood Cancer Registry of Chile: a population-based study of childhood cancer and insights for low- and middle-income countries.
This population-based analysis of 8,821 childhood cancers in Chile reports complete national registry coverage, rising recorded incidence, improved five-year survival, and a non-significant decline in mortality while describing a registry model relevant to other low- and middle-income countries.
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This population-based analysis of 8,821 childhood cancers in Chile reports complete national registry coverage, rising recorded incidence, improved five-year survival, and a non-significant decline in mortality while describing a registry model relevant to other low- and middle-income countries.
Research significance
The evidence supports RENCI as a high-coverage surveillance system documenting national outcome trends; by inference, such registry infrastructure could help identify care gaps, guide resource allocation, and evaluate future childhood-cancer policies, but the study does not test a treatment or establish that registry implementation caused the survival improvement.
Source abstract
BACKGROUND: Cancer registries in Latin America continue to face challenges related to coverage, under-registration, and data quality. We evaluated childhood cancer epidemiology in Chile from 2007 to 2023, assessed the quality of the National Childhood Cancer Registry (RENCI) according to International Agency for Research on Cancer (IARC) standards, and described the childhood cancer control policy context. METHODS: We analysed 8821 incident cases in children aged 0-14 years registered in RENCI and classified according to ICD-O-3.2 and ICCC-3. Incidence and mortality rates were age-standardised using the Segi world standard population. Mortality and years of potential life lost (YPLL) were estimated using national mortality data (2002-2021). Trends were assessed using Joinpoint regression and five-year observed survival using the Kaplan-Meier method. Registry quality was evaluated according to IARC criteria. FINDINGS: Incidence increased from 137.4 to 143.0 per million (AAPC 1.36, 95% CI 0.5-2.4), with leukaemias remaining the most common cancer type (58.6 per million), followed by central nervous system tumours (24.8) and lymphomas (12.7). Five-year survival improved from 71.4% (95% CI 69.6-73.8) in 2007-2011 to 80.5% (95% CI 76.4-83.9) in 2020-2023. Mortality declined from 36.3 to 25.7 per million between 2002 and 2021 (AAPC -0.57, 95% CI -1.5 to 0.4). RENCI achieved 100% national coverage, an MV% of 93.5%, and a DCO% of 0.7%. INTERPRETATION: This study describes the implementation and operation of a national population-based childhood cancer registry in a middle-income country and reports its epidemiological findings. Key findings include increasing incidence, improved survival in recent cohorts, and a non-significant downward trend in mortality. These results offer practical insights for other low- and middle-income countries seeking to strengthen childhood cancer surveillance systems. The descriptive nature of the study and the temporal (non-causal) associations observed should be considered when interpreting the findings. FUNDING: National Childhood Cancer Registry (RENCI) of the Ministry of Health of Chile.