Development and implementation of a pediatric cancer hospital database using the REDCap software
DOI:
https://doi.org/10.33448/rsd-v11i16.38413Keywords:
Oncology; Child; Adolescent; Database; Information systems; Neoplasms; Information storage and retrieval.Abstract
Childhood and adolescent cancer can affect individuals under 20 years of age, being a rare diagnosis, but with great biopsychosocial repercussions in patients and their families. Advances in information health information technology (HIT) have provided the increasing use of electronic registration systems as a tool in coping with various diseases. The aim of this study was to develop and implement a clinical database (DB) of children and adolescents with cancer. The characteristics and applicability of this DB were defined from the needs of the hospital involved in the research and guided by the review of the specialized literature. For the construction of DB, the web platform for electronic capture of research data (REDCap), accessible through the partnership with the REDCap consortium. The data entered in the DB were from patients under 20 years of age, diagnosed with cancer, undergoing chemotherapy. We analyzed 60 medical records that met the eligibility criteria. There were 103 hospitalizations for febrile neutropenia, and 89.3% (92) did not evolve with severity, while 10.7% (11) required treatment in an intensive care unit. Socioeconomic and demographic data on cancer diagnosis, disease stage and treatment were also collected. Even in environments with limited resources, it is possible to have access to quality information for facing childhood cancer through IT solutions such as the REDCap platform. Future studies may be conducted with the cooperation of various institutions that treat children and adolescents with cancer, providing a robust evidence base for clinical and translational research.
References
Brasil. (2018). Lei nº 13.709, de 14 de agosto de 2018. Lei Geral de Proteção de Dados Pessoais (LGPD). Brasília, DF: Presidência da República. https://www.planalto.gov.br/ccivil_03/_ato2015-2018/2018/lei/l13709.htm
Brasil, Ministério da Saúde. (2010). Registros hospitalares de câncer: planejamento e gestão/Instituto Nacional de Câncer (2nd ed.). https://www.inca.gov.br/sites/ufu.sti.inca.local/files/media/document/registros-hospitalares-de-cancer-2010.pdf
Brasil. (2021). Research Eletronic Data Capture - REDCap. Empresa Brasileira de Serviços Hospitalares. https://www.gov.br/ebserh/pt-br/governanca/plataformas-e-tecnologias/redcap
Bhopal, R. S. (2016). Concepts of Epidemiology Integrating the ideas, theories, principles, and methods of epidemiology (3rd ed.). Oxford Univesity Press. https://www.accord.edu.so/course/material/epidemiology-432/pdf_content
CISA. (2022). Cybersecurity & infrastructure security agency. Federal Information Security Modernization Act (CISA). https://www.cisa.gov/federal-information-security-modernization-act
Cohn, S. L., Pearson, A. D., London, W. B., Monclair, T., Ambros, P. F., Brodeur, G. M., Faldum, A., Hero, B., Iehara, T., Machin, D., Mosseri, V., Simon, T., Garaventa, A., Castel, V., Matthay, K. K., & INRG Task Force (2009). The International Neuroblastoma Risk Group (INRG) classification system: an INRG Task Force report. Journal of clinical oncology: official journal of the American Society of Clinical Oncology, 27(2), 289–297. https://doi.org/10.1200/JCO.2008.16.6785
Erdmann, F., Frederiksen, L. E., Bonaventure, A., Mader, L., Hasle, H., Robison, L. L., & Winther, J. F. (2021). Childhood cancer: Survival, treatment modalities, late effects and improvements over time. Cancer epidemiology, 71(B), 1-20. https://doi.org/10.1016/j.canep.2020.101733
Evans R. S. (2016). Electronic health records: then, now, and in the future. Yearbook of medical informatics, Suppl 1, S48–s61. https://doi.org/10.15265/IYS-2016-s006
Fasola, G., Macerelli, M., Follador, A., Rihawi, K., Aprile, G., & Della Mea, V. (2014). Health information technology in oncology practice: a literature review. Cancer informatics, 13, 131–139. https://doi.org/10.4137/CIN.S12417
Feliciano, S. V. M., Santos, M. de O., & Pombo-de-Oliveira, M. S. (2018). Incidência e Mortalidade por Câncer entre Crianças e Adolescentes: uma Revisão Narrativa. Revista Brasileira De Cancerologia, 64(3), 389–396. https://doi.org/10.32635/2176-9745.RBC.2018v64n3.45
Gallagher, S. A., Smith, A. B., Matthews, J. E., Potter, C. W., Woods, M. E., Raynor, M., Wallen, E. M., Rathmell, W. K., Whang, Y. E., Kim, W. Y., Godley, P. A., Chen, R. C., Wang, A., You, C., Barocas, D. A., Pruthi, R. S., Nielsen, M. E., & Milowsky, M. I. (2014). Roadmap for the development of the University of North Carolina at Chapel Hill Genitourinary Oncology Database--UNC GOLD. Urologic oncology, 32(1), 32.e1–32. e9. https://doi.org/10.1016/j.urolonc.2012.11.019
Gupta, S., Aitken, J. F., Bartels, U., Brierley, J., Dolendo, M., Friedrich, P., Fuentes-Alabi, S., Garrido, C. P., Gatta, G., Gospodarowicz, M., Gross, T., Howard, S. C., Molyneux, E., Moreno, F., Pole, J. D., Pritchard-Jones, K., Ramirez, O., Ries, L. A. G., Rodriguez-Galindo, C., Shin, H. Y., & Frazier, A. L. (2016). Paediatric cancer stage in population-based cancer registries: the Toronto consensus principles and guidelines. The Lancet. Oncology, 17(4), e163–e172. https://doi.org/10.1016/S1470-2045(15)00539-2
Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., & Conde, J. G. (2009). Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support. Journal of biomedical informatics, 42(2), 377–381. https://doi.org/10.1016/j.jbi.2008.08.010
Haux R. (2006). Health information systems - past, present, future. International journal of medical informatics, 75(3-4), 268–281. https://doi.org/10.1016/j.ijmedinf.2005.08.002
Hawley, S., Yu, J., Bogetic, N., Potapova, N., Wakefield, C., Thompson, M., Kloiber, S., Hill, S., Jankowicz, D., & Rotenberg, D. (2021). Digitization of Measurement-Based Care Pathways in Mental Health through REDCap and Electronic Health Record Integration: Development and Usability Study. Journal of medical Internet research, 23(5), 1-11. https://doi.org/10.2196/25656
Health Insurance Portability and Accountability Act de 1996. http://www.hhs.gov/ocr/privacy/index.html
Instituto Nacional de Câncer José Alencar Gomes da Silva. (2019). Estimativa 2020: incidência de câncer no Brasil. Rio de Janeiro, 2019. https://www.inca.gov.br/sites/ufu.sti.inca.local/files//media/document//estimativa-2020-incidencia-de-cancer-no-brasil.pdf
Jeanquartier, F., Jean-Quartier, C., & Holzinger, A. (2019). Use case driven evaluation of open databases for pediatric cancer research. BioData Mining 12 (2), 1-20. https://doi.org/10.1186/s13040-018-0190-8
Mancuso, A. C. B., Castro, S. M. de J., Guimarães, L. S. P., Leotti, V. B., Hirakata, V. N., & Camey, S. A. (2018). Estatística descritiva: perguntas que você sempre quis fazer, mas nunca teve coragem. Clinical & Biomedical Research, 38(4), 414–418. https://doi.org/10.4322/2357-9730.89242
Mosa, A. S., Yoo, I., & Parker, J. C. (2015). Online electronic data capture and research data repository system for clinical and translational research. Missouri medicine, 112(1), 46–52. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6170092/
Organização Mundial de Saúde. (2005). CID-O Classificação Internacional de Doenças para Oncologia. (3rd ed.) Editora da Universidade de São Paulo.
Organização Pan-Americana da Saúde. (2021, June 23). Iniciativa Global da OMS contra o câncer infantil: implementação na América Latina e no Caribe. IRIS - Institutional Repository for Information Sharing. https://iris.paho.org/handle/10665.2/54416
Phillips M. (2018). International data-sharing norms: from the OECD to the General Data Protection Regulation (GDPR). Human genetics, 137(8), 575–582. https://doi.org/10.1007/s00439-018-1919-7
Steliarova-Foucher, E., Colombet, M., Ries, L. A. G., Moreno, F., Dolya, A., Bray, F., Hesseling, P., Shin, H. Y., Stiller, C. A., & IICC-3 contributors (2017). International incidence of childhood cancer, 2001-10: a population-based registry study. The Lancet. Oncology, 18(6), 719–731. https://doi.org/10.1016/S1470-2045(17)30186-9
Vaz, J., Abelin, A. P., Schmidt, M. M., Oliveira, P. P., Gottschall, C. A. M., Rodrigues, C. G., & Quadros, A. S. (2020). Criação e Implementação de um Banco de Dados Prospectivo e Multicêntrico de Pacientes com Infarto Agudo do Miocárdio: RIAM. Arquivos brasileiros de cardiologia, 114(3), 446–455. https://doi.org/10.36660/abc.20190036
Volchenboum, S. L., Cox, S. M., Heath, A., Resnick, A., Cohn, S. L., & Grossman, R. (2017). Data Commons to Support Pediatric Cancer Research. American Society of Clinical Oncology educational book. American Society of Clinical Oncology. Annual Meeting, 37, 746–752. https://doi.org/10.1200/EDBK_175029
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