The Brazilian Data Managers Working Group: a 10-year grassroots initiative for the development of the national hematopoietic cell transplantation and cellular therapy registry
DOI:
https://doi.org/10.46765/2675-374X.2025v7n1e367Keywords:
Hematopoietic cell transplantation, National Registry, Cellular Therapy, CIBMTR, CAR-T CellAbstract
Hematopoietic cell transplantation is a data-driven field, and reporting to outcomes registries has become a common practice worldwide. However, comprehensive transplant data collection requires dedicated professionals who can accurately capture data, follow international guidelines, and maintain reliable databases for the evaluation of transplant outcomes. This article describes the development and evolution of the Brazilian Data Managers Working Group (GTGD) and its contributions to professional education, collaborative networking, registry implementation, data quality improvement, and scientific engagement in hematopoietic cell transplantation and cellular therapy in Brazil. The transition from single-center reporting to the establishment of a national transplant registry required collaboration among centers, partnership between the Brazilian Society of Cellular Therapy and Bone Marrow Transplantation (SBTMO) and the Center for International Blood and Marrow Transplant Research (CIBMTR), and the development of the GTGD to ensure the sustainability of this effort. The GTGD originated from a grassroots collaboration among data managers and transplant centers seeking to address limited professional recognition, inconsistent reporting practices, and restricted access to specialized training. Supported by collaboration with the SBTMO and CIBMTR, the initiative evolved into a nationally coordinated network. Over the decade, the GTGD promoted structured education, knowledge sharing, professional development, operational support, standardized data-management practices, quality-improvement initiatives, and scientific collaboration. In parallel, participation in the national multicenter protocol expanded to 95 centers, with 51 centers reporting data to the CIBMTR by 2025. The group also developed educational resources, supported benchmarking and cellular therapy reporting, strengthened national and international collaboration, and increased the visibility and professional identity of data managers within transplant programs. This experience demonstrates how coordinated engagement, continuous education, institutional collaboration, and professional advocacy can contribute to the development of national registry infrastructure and the generation of reliable real-world evidence in hematopoietic cell transplantation and cellular therapy.
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Copyright (c) 2026 Cinthya Corrêa da Silva, Heliz Regina Alves das Neves, Anderson João Simione, Alayne Magalhães Trindade Domingues Yamada, Antonio Vaz de Macedo, Afonso Celso Vigorito, Vanessa Aparecida do Nascimento Varjão, Flavia Ferreira da Costa, Adriana Mendes de Quadros Cavilha, Monique Ammi, Nelson Hamerschlak, Vergilio Antonio Rensi Colturato, Adriana Seber, Carmen Silvia Vieitas Vergueiro, Simone Ojima Ferreira, Andreia Ribeiro de Almeida, Vaneuza Araújo Moreira Funke, Ricardo Pasquini, Carmem Maria Sales Bonfim, Paula Moreira da Silva Sabaini, Rosana Rocha Concilio, Joaquim Gasparini, Bruna Letícia da Silva Santos Geraldo, Leonardo Jun Otuyama, Luiz Carlos da Costa Junior, Eliana Cristina Martins Miranda, Fernando Barroso Duarte, Beatrice Araújo Duarte, Marcelo C. Pasquini
This work is licensed under a Creative Commons Attribution 4.0 International License.
