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Core data set for real world data in multiple sclerosis: customization for latin america from a global task force recommendation.

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dc.contributor.author Rojas, Juan Ignacio
dc.contributor.author Gracia, Fernando
dc.contributor.author Parciak, T.
dc.contributor.author Alonso, R. N.
dc.contributor.author Becker, Jefferson
dc.contributor.author Treviño Frenk, Irene
dc.contributor.author Alonso Serena, Marina
dc.contributor.author Giunta, Diego Hernán
dc.contributor.author Abad, P.
dc.contributor.author Carnero Contentti, Edgar
dc.contributor.author Carrá, Adriana
dc.contributor.author Correa Díaz, Edgar Patricio
dc.contributor.author Correale, Jorge
dc.contributor.author Cristiano, Edgardo
dc.contributor.author Flores, José
dc.contributor.author Fruns, Manuel
dc.contributor.author Galleguillos Goiry, Lorna
dc.contributor.author Garcea, Orlando
dc.contributor.author Hamuy, Fernando
dc.contributor.author Lana Peixoto, Marco A.
dc.contributor.author Navas, Carlos
dc.contributor.author Papais Alvarenga, Regina
dc.contributor.author Patrucco, Liliana
dc.contributor.author Rivera, V.
dc.contributor.author Tenembaum, S. N.
dc.contributor.author Ysrraelit, María Célica
dc.contributor.author Peeters, L.M.
dc.date.accessioned 2024-04-23T15:29:25Z
dc.date.available 2024-04-23T15:29:25Z
dc.date.issued 2024-04-01
dc.identifier.citation Rojas JI, Gracia F, Parciak T, Alonso R, Becker J, Treviño-Frenk I, Alonso-Serena M, Giunta D, Abad P, Carnero-Contentti E, Carrá A, Correa-Díaz EP, Correale J, Cristiano E, Flores J, Fruns M, Galleguillos L, Garcea O, Hamuy F, Lana-Peixoto M, Navas C, Pappais-Alvarenga R, Patrucco L, Rivera V, Tenembaum S, Ysrraelit MC, Peeters LM. Core data set para la generación de datos de la vida real en esclerosis múltiple: adaptación de una iniciativa global para América Latina [Core data set for real world data in multiple sclerosis: customization for latin america from a global task force recommendation]. Rev Neurol. 2024 Apr 1;78(7):185-197. Spanish. doi: 10.33588/rn.7807.2023326. es_ES
dc.identifier.uri https://doi.org/10.33588/rn.7807.2023326
dc.identifier.uri https://repositorio.fleni.org.ar/xmlui/handle/123456789/1090
dc.description.abstract Introduction: The primary objective of the core data set is to reduce heterogeneity and promote harmonization among data sources in EM, thereby reducing the time needed to execute real life data collection efforts. Recently, a group led by the Multiple Sclerosis Data Alliance has developed a core data set for collecting real-world data on multiple sclerosis (MS) globally. Our objective was to adapt this global data set to the needs of Latin America, so that it can be implemented by the registries already developed and in the process of development in the region. Material and methods: A working group was formed regionally, the core data set created globally was adapted (translation process into Spanish, incorporation of regional variables and consensus on variables to be used). Consensus was obtained through the remote Delphi methodology of a round of questionnaires and remote discussion of the core data set variables. Results: A total of 25 professionals from Latin America carried out the adaptation process between November 2022 and July 2023. Agreement was established on a core data set of nine categories and 45 variables, version 2023 to suggest its implementation in developed or developing registries, and MS cohorts in the region. Conclusion: The core data set seeks to harmonize the variables collected by registries and cohorts in MS in Latin America in order to facilitate said collection and allow collaboration between sources. Its implementation will facilitate real life data collection and collaboration in the region. es_ES
dc.language.iso spa es_ES
dc.publisher Viguera es_ES
dc.rights info:eu-repo/semantics/openAccess
dc.subject Esclerosis Múltiple es_ES
dc.subject Multiple Sclerosis es_ES
dc.subject América Latina es_ES
dc.subject Latin America es_ES
dc.title Core data set for real world data in multiple sclerosis: customization for latin america from a global task force recommendation. es_ES
dc.type info:eu-repo/semantics/article es_ES
dc.type info:eu-repo/semantics/publishedVersion
dc.description.fil Fil: Correale, Jorge. Fleni. Departamento de Neurología. Servicio de Neuroinmunología y Enfermedades Desmielinizantes; Argentina.
dc.description.fil Fil: Ysrraelit, María Célica. Fleni. Departamento de Neurología. Servicio de Neuroinmunología y Enfermedades Desmielinizantes; Argentina.
dc.relation.ispartofVOLUME 78
dc.relation.ispartofNUMBER 7
dc.relation.ispartofPAGINATION 185-197.
dc.relation.ispartofCOUNTRY España
dc.relation.ispartofCITY Barcelona
dc.relation.ispartofTITLE Revista de Neurología
dc.relation.ispartofISSN 1576-6578
dc.type.snrd info:ar-repo/semantics/artículo es_ES


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