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Core data set para la generación de datos de la vida real en esclerosis múltiple: adaptación de una iniciativa global para América Latina

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dc.contributor.authorRojas, Juan
dc.contributor.authorGracia, Fernando
dc.contributor.authorParciak, Tina
dc.contributor.authorAlonso, Ricardo
dc.contributor.authorBecker, Jefferson
dc.contributor.authorTreviño, Irene
dc.contributor.authorAlonso, Marina
dc.contributor.authorGiunta, Diego
dc.contributor.authorAbad, Patricio
dc.contributor.authorCarnero, Edgar
dc.contributor.authorCarrá, Adriana
dc.contributor.authorCorrea, Edgar
dc.contributor.authorCorreale, Jorge
dc.contributor.authorCristiano, Edgardo
dc.contributor.authorFlores, José
dc.contributor.authorFruns, Manuel
dc.contributor.authorGalleguillos, Lorna
dc.contributor.authorGarcea, Orlando
dc.contributor.authorHamuy, Fernando
dc.contributor.authorLana, Marco
dc.contributor.authorNavas, Carlos
dc.contributor.authorPappais, Regina
dc.contributor.authorPatrucco, Liliana
dc.contributor.authorRivera, Víctor
dc.contributor.authorTenembaum, Silvia
dc.contributor.authorYsrraelit, María
dc.contributor.authorPeeters, Liesbet
dc.date.accessioned2025-01-02T20:29:57Z
dc.date.available2025-01-02T20:29:57Z
dc.date.issued2024
dc.description.abstractIntroduction: 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.
dc.description.versionVersión Publicada
dc.identifier.citationRojas 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.
dc.identifier.doihttps://doi.org/10.33588/rn.7807.2023326
dc.identifier.urihttps://hdl.handle.net/11447/9553
dc.language.isoes
dc.subjectAdvisory Committees
dc.subjectConsensus
dc.subjectHumans
dc.subjectLatin America / epidemiology
dc.subjectMultiple Sclerosis / epidemiology
dc.subjectRegistries
dc.titleCore data set para la generación de datos de la vida real en esclerosis múltiple: adaptación de una iniciativa global para América Latina
dc.typeArticle
dcterms.accessRightsAcceso Abierto
dcterms.sourceRevista de Neurologia
dspace.entity.typePublication

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