IARC 60th Anniversary - 19-21 May 2026
Session : Global Advances in Transforming towards Resilient and Equitable Health System
Implementing a Real-Time Pediatric Cancer Registry Network in a Middle-Income Country: Early Experience from the AMARTE – St. Jude Global Alliance.
MORAIS A. 11, LINS M. 13, AMARAL A. 10, REIS M. 14, VENEZIANO D. 15, SHIRAMIZO S. 12, CAHU JUNIOR A. 13, ANA S. 12, GARCIA M. 2, BHAKTA N. 2, RODRIGUES K. 1, FARIA T. 1,2, ALVARO D. 1, LOPES L. 1,2, LOGGETTO P. 2, FRIEDRICH P. 2, RODRIGUEZ-GALINDO C. 2, MAGALHÃES I. 3, FLORA W. 4, PIANOVSKI M. 5, SILVA M. 6, SANTANA D. 1,2, TIZIANI V. 3, OLIVEIRA T. 4, SANZ R. 6, SEGREDO M. 7, BUENO T. 6, MIRANDA M. 3, VIANA V. 8, AGUIRRE NETO J. 9
1 BARRETOS CHLIDREN'S HOSPITAL. BARRETOS CANCER HOSPITAL., BARRETOS, Brazil; 2 ST. JUDE CHILDREN'S RESEARCH HOSPITAL, MEMPHIS, United States; 3 HOSPITAL DA CRIANÇA DE BRASÍLIA JOSÉ DE ALENCAR, BRASÍLIA, Brazil; 4 HOSPITAL PEQUENO PRÍNCIPE, CURITIBA, Brazil; 5 HOSPITAL ERASTINHO, CURITIBA, Brazil; 6 HOSPITAL GACC VALE DO PARAÍBA, SÃO JOSÉ DOS CAMPOS, Brazil; 7 HOSPITAL DAS CLÍNICAS DA FACULDADE DE MEDICINA DE BOTUCATU, BOTUCATU, Brazil; 8 HOSPITAL INFANTIL ALBERT SABIN, FORTALEZA, Brazil; 9 SANTA CASA DE BELO HORIZONTE, BELO HORIZONTE, Brazil; 10 HOSPITAL DAS CLÍNICAS DA UNIVERSIDADE FEDERAL DE UBERLÂNDIA, UBERLÂNDIA, Brazil; 11 HOSPITAL UNIVERSITÁRIO OSWALDO CRUZ, RECIFE, Brazil; 12 GRAACC UNIFESP, SÃO PAULO, Brazil; 13 INSTITUTO DE MEDICINA INTEGRAL PROFESSOR FERNANDO FIGUEIRA, RECIFE, Brazil; 14 HOSPITAL DAS CLÍNICAS DA FACULDADE DE MEDICINA DE RIBEIRÃO PRETO DA UNIVERSIDADE DE SÃO PAULO , RIBEIRÃO PRETO, Brazil; 15 HOSPITAL AMARAL CARVALHO, JAÚ, Brazil
Background and Aims: In 2019, thirteen Brazilian pediatric oncology centers founded the AMARTE Alliance with support from St. Jude Global. From its inception, AMARTE prioritized high-quality data collection. The objective of this study is to report the initial results of a pediatric hospital-based cancer registry network established to monitor and support the actions developed by AMARTE.
Methods: Key aspects related to data collection, workforce, and legal compliance were defined prior to implementation. AMARTE leadership, together with representatives from all participating institutions, agreed to adopt the SJCARES Registry data collection standards using the REDCap platform. To ensure sustained governance, a Registry and Epidemiological Data Subcommittee was created within AMARTE to support implementation workflows at each hospital. In addition, the AMARTE Management Committee periodically reviews compliance with data collection procedures and the use of sensitive data consent form in accordance with Brazilian data protection law. Each participating institution pointed at least one registrar and one medical monitor. All participants were required to complete the global SJCARES training available on the CURE4Kids platform, supplemented by locally developed REDCap training.
Results: Since the creation of the network, 90 virtual meetings have been held, with an average of 30 participants per meeting. All participants received training in the use of the selected tools. Between January 2022 and December 2025, a total of 5,155 new analytical cases were registered. The majority are new cases to the center without diagnosis and without treatment (4,442 cases). By December 2025, the number of participating institutions had increased to 38. Overall, the 38-institution network is estimated to register approximately 3,000 new cases per year. In 2025, the subcommittee coordination conducted site visits to eight institutions across the five Brazilian geographic regions to better understand the physical infrastructure of the registries, as well as the strengths and challenges faced by local teams. Among the strengths most frequently observed were a shared sense of purpose and a high level of team commitment. In contrast, common challenges included workforce shortages and high staff turnover, particularly among the registrars.
Conclusions: These findings demonstrate the feasibility of implementing a real-time pediatric cancer surveillance system through a hospital-based network, capable of guiding interventions to improve clinical outcomes in low- and middle-income countries.