Neuromyelitis optica spectrum disorder in Latin America: a global data share initiative.
СтатьяМногоцентровое исследованиеНаблюдательное исследованиеНазвание и аннотация: Перевод в очереди
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Rojas Juan I, Patrucco Liliana, Cristiano Edgardo, Gortari José I, Ortiz Salas Paola A, Zuluaga Rodas María I, Miranda Jhair, Guio Sanchez Claudia, Acosta Camargo Laura C, Lana Peixoto Marco, Becker Jefferson, Gracia Fernando, Armien Blas, Carrillo Gabriela, Garcia Karla, Ramirez Deyanira, Thompson Arnold, Van Sijtveld Ivonne, Pereira Daniel, Larrategui Mario, Garcia Valle Luis A, Benzadon Aron, Araujo Pahola, Ramirez Sanchez Nicia E, Diaz Alejandro, Santos Pujols Biany, Weiser Roberto, Valderrama Carlos, Delgado Jaime, Lopez Ericka, Corea Karla, Portillo Rivera Ligia I, Rodriguez Salinas Luis C, de Escobar Romy, Treviño Frenk Irene, Baños-Hernández Lilia Anahi, Correa Diaz Edgar P, Llerena Payango Andrea F, Valladares Velez Jonathan A, Galleguillos Lorna, Soto Del Castillo Ibis, Soares Neto Herval Ribeiro, de Queiroz André Luiz Guimarães, Rocha Valeria, Higgie Juan Ramón, Legnani Cecilia, Sorondo Noelia, Yorio Diana, Diaz de la Fe Amado, Oliveira de Cuba Irma, Candanedo Awilda, Carnero Contentti Edgar
Аннотация
The objective of the study was to develop a global data share initiative to collect data from many sources (registries and observational databases) of NMOSD (neuromyelitis optica spectrum disorder) patients in LATAM (Latin America) to describe the frequency of patients untreated in our region to focus access and educational projects to improve patients care and long-term outcomes. METHODS: This was a non-interventional, multicenter cross-sectional study that included NMOSD patients from LATAM. Data were acquired through independent registries and observational single and multicenter cohorts from 16 countries (Argentina n = 379, Brazil n = 250, Chile n = 50, Colombia n = 250, Ecuador n = 47, Mexico n = 101, Uruguay n = 10, Venezuela n = 31, Aruba n = 4, Cuba n = 13, El Salvador n = 7, Guatemala n = 23, Honduras n = 7, Nicaragua n = 6, Panama n = 42 and Dominican Republic n = 48). Data homogenization was conducted using the data dictionary provided by each custodian in a single, centralized database with variables loaded in a homogeneous manner. RESULTS: A total of 1264 patients were included from three nationwide registries and seven observational cohorts from LATAM. 90.8 % (n = 1148) patients were receiving long-term treatment for NMOSD, while 9.2 % (n = 116) were untreated. Most frequent treatment received in the analyzed population was rituximab (56.7 %), followed by azathioprine (28 %). Despite the availability of novel therapeutic options such as satralizumab, eculizumab, and inebilizumab, these were used in <5 % of AQP4-IgG-positive patients CONCLUSION: The study helps to understand how patients are being treated in the region and to develop educational and access strategies to improve patients care.