Luiz Fernando Lopes, Patrícia Loggetto, André de Oliveira Junior, Bruna Farias, Carla Nunes, Aline Esmeraldo Andrade de Almeida, Anna Beatriz Costa Neves do Amaral, Anita Frisanco, Carmem Maria Costa Mendonça Fiori, Daniela Santana, Débora Garcia Gasperini, Eliane Francelino, Fabianne Carlesse, Fernanda Crizol Bazaglia, Flora Mitie Watanabe, Isis Quezado Magalhães, Joaquim Caetano de Aguirre Neto, Juliana Teixeira Costa, Karla Emilia de Sá Rodrigues, Mara A. D. Pianovski, Marcelo Milone, Maristella Bergamo Francisco dos Reis, Monnie Abraham, Rosemary Sanz, Seila Prado, Simone de Campos Viera Abib, Thelma Alves de Oliveira, Valdenize Tiziani, Viviany Oliveira Viana, Paola Friedrich, Monika L. Metzger, Carlos Rodriguez-Galindo
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引用次数: 0
Abstract
Introduction
In Brazil, inequalities in access to treatment and survival of childhood cancer are observed across different geographic regions. In 2014, under the coordination of Hospital de Câncer Infantojuvenil de Barretos (Fundação Pio XII), six hospitals met weekly for case discussion. In 2019, the AMARTE (Apoio Maior Aumentando Recursos e Treinamentos Especializados) Alliance officially began with the aim to improve the quality of pediatric oncology care in Brazil and became a collaborative network of innovation, research, and learning with 31 member institutions in 2024.
Methods
AMARTE follows four strategic pillars: (1) equalize diagnostics, (2) homogenize treatment, (3) epidemiological and survival studies, and (4) scientific development and innovation. Fundação Pio XII and St. Jude Children's Research Hospital provide infrastructure and human resources. Implementation resources are supported mainly by the member institution. The first strategic goal was to maintain sustainable member engagement. A semestral assessment (SCORE) monitors the progress and engagement level, based on defined indicators.
Results
Three engagement reports have been published, with an increase in members’ scores: 17 hospitals increased their SCORE, 7 decreased, and 1 hospital did not change. Key achievements include a common data registry, diagnostic and treatment protocols, regular technical-scientific meetings, and the formation of a fundraising group to achieve financial sustainability.
Conclusion
The first decade of the AMARTE Alliance highlights the relevance of collaboration in pediatric oncology. Challenges refer to the sustainable participation of specialists and heterogeneous governance structure across members, requiring flexibility in the implementation of shared initiatives. Outcome indicators are being developed to assess long-term impact.
在巴西,不同地理区域的儿童癌症获得治疗和生存方面存在不平等现象。2014年,在巴雷托斯儿童医院( Pio十二世基金会)的协调下,六家医院每周开会讨论病例。2019年,AMARTE (Apoio Maior Aumentando Recursos e Treinamentos Especializados)联盟正式成立,旨在提高巴西儿科肿瘤护理质量,并于2024年成为一个拥有31家成员机构的创新、研究和学习协作网络。方法:AMARTE遵循四个战略支柱:(1)均等化诊断,(2)同质化治疗,(3)流行病学和生存研究,(4)科学发展和创新。皮奥十二基金会和圣犹达儿童研究医院提供基础设施和人力资源。实施资源主要由成员机构提供支持。第一个战略目标是保持可持续的成员参与。学期评估(SCORE)根据定义的指标监测进度和参与水平。结果:发布了3份敬业度报告,会员评分均有所提高:17家医院评分提高,7家医院评分降低,1家医院评分不变。主要成就包括共同数据登记、诊断和治疗方案、定期召开技术-科学会议,以及成立一个筹资小组以实现财政可持续性。结论:AMARTE联盟的第一个十年突出了儿科肿瘤学合作的相关性。挑战是指专家的可持续参与和跨成员的异质治理结构,需要在实现共享计划方面具有灵活性。目前正在制定结果指标,以评估长期影响。
期刊介绍:
Pediatric Blood & Cancer publishes the highest quality manuscripts describing basic and clinical investigations of blood disorders and malignant diseases of childhood including diagnosis, treatment, epidemiology, etiology, biology, and molecular and clinical genetics of these diseases as they affect children, adolescents, and young adults. Pediatric Blood & Cancer will also include studies on such treatment options as hematopoietic stem cell transplantation, immunology, and gene therapy.