Article
Author: Valladares Velez, Jonathan A ; Llerena Payango, Andrea F ; Portillo Rivera, Ligia I ; Yorio, Diana ; Correa Diaz, Edgar P ; Ortiz Salas, Paola A ; Van Sijtveld, Ivonne ; Pereira, Daniel ; Treviño Frenk, Irene ; Weiser, Roberto ; Larrategui, Mario ; Rocha, Valeria ; Rojas, Juan I ; Lana Peixoto, Marco ; de Queiroz, André Luiz Guimarães ; Miranda, Jhair ; Santos Pujols, Biany ; Armien, Blas ; Corea, Karla ; Galleguillos, Lorna ; Legnani, Cecilia ; de Escobar, Romy ; Rodriguez Salinas, Luis C ; Diaz de la Fe, Amado ; Zuluaga Rodas, María I ; Candanedo, Awilda ; Patrucco, Liliana ; Soto Del Castillo, Ibis ; Araujo, Pahola ; Delgado, Jaime ; Gortari, José I ; Soares Neto, Herval Ribeiro ; Cristiano, Edgardo ; Thompson, Arnold ; Oliveira de Cuba, Irma ; Sorondo, Noelia ; Becker, Jefferson ; Baños-Hernández, Lilia Anahi ; Diaz, Alejandro ; Garcia, Karla ; Guio Sanchez, Claudia ; Carrillo, Gabriela ; Higgie, Juan Ramón ; Gracia, Fernando ; Valderrama, Carlos ; Ramirez, Deyanira ; Acosta Camargo, Laura C ; Benzadon, Aron ; Garcia Valle, Luis A ; Ramirez Sanchez, Nicia E ; Carnero Contentti, Edgar ; Lopez, Ericka
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.