Cancer epidemiology · 2025
Use of population-based cancer registries for cancer surveillance and control in Latin America.
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Peña-Torres Esperanza, de Vries Esther, de Camargo Cancela Marianna, Piñeros-Petersen Marion
Аннотация
BACKGROUND: Population-based cancer registries (PBCRs) are essential for guiding cancer control strategies. In Latin America (LATAM), progress has been made in expanding the number of PBCRs, but their effective use in cancer control remains limited. This study assessed the current utilization of PBCR data, identified barriers and facilitators, and explored opportunities to strengthen their role in cancer control across the region.
METHODS: A cross-sectional electronic survey was conducted among 81 PBCRs in LATAM between November 2023 and February 2024. Forty-three PBCRs (53.1 %) responded. The survey included questions on registry operations, data availability and dissemination, research participation, and involvement in cancer control. Open-ended responses were analyzed thematically.
RESULTS: Most registries were subnational (93 %) and hosted by local health authorities. Staffing was limited (≤5 staff in 65 %), and population coverage varied. Although 90.7 % accessed mortality data and personal identifiers, only 70 % collected staging data for screen-detectable cancers, and staging was reported in under 40 % of cases. While 84.1 % shared data for research and 68.1 % participated in research, only 39.5 % were involved in prevention studies. Data publication was often delayed, with only 44.2 % having incidence data beyond 2018. Fewer than half had published data in the past five years, and engagement with decision-makers or use in screening and palliative care programs was rare. Common barriers included limited data sources, staff shortages, fragmented medical records, and low stakeholder awareness of PBCR functions.
CONCLUSIONS: Despite expanded numbers of PBCR in LATAM, their usage and integration into cancer control remains limited. Strengthening institutional support, improving data quality and recollection, as well as enhancing collaboration with health authorities and researchers are critical for maximizing the impact of PBCRs in cancer control across the region.
METHODS: A cross-sectional electronic survey was conducted among 81 PBCRs in LATAM between November 2023 and February 2024. Forty-three PBCRs (53.1 %) responded. The survey included questions on registry operations, data availability and dissemination, research participation, and involvement in cancer control. Open-ended responses were analyzed thematically.
RESULTS: Most registries were subnational (93 %) and hosted by local health authorities. Staffing was limited (≤5 staff in 65 %), and population coverage varied. Although 90.7 % accessed mortality data and personal identifiers, only 70 % collected staging data for screen-detectable cancers, and staging was reported in under 40 % of cases. While 84.1 % shared data for research and 68.1 % participated in research, only 39.5 % were involved in prevention studies. Data publication was often delayed, with only 44.2 % having incidence data beyond 2018. Fewer than half had published data in the past five years, and engagement with decision-makers or use in screening and palliative care programs was rare. Common barriers included limited data sources, staff shortages, fragmented medical records, and low stakeholder awareness of PBCR functions.
CONCLUSIONS: Despite expanded numbers of PBCR in LATAM, their usage and integration into cancer control remains limited. Strengthening institutional support, improving data quality and recollection, as well as enhancing collaboration with health authorities and researchers are critical for maximizing the impact of PBCRs in cancer control across the region.