Browsing by Author "Gracia, Fernando"
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Publication Core data set para la generación de datos de la vida real en esclerosis múltiple: adaptación de una iniciativa global para América Latina(2024) Rojas, Juan; Gracia, Fernando; Parciak, Tina; Alonso, Ricardo; Becker, Jefferson; Treviño, Irene; Alonso, Marina; Giunta, Diego; Abad, Patricio; Carnero, Edgar; Carrá, Adriana; Correa, Edgar; Correale, Jorge; Cristiano, Edgardo; Flores, José; Fruns, Manuel; Galleguillos, Lorna; Garcea, Orlando; Hamuy, Fernando; Lana, Marco; Navas, Carlos; Pappais, Regina; Patrucco, Liliana; Rivera, Víctor; Tenembaum, Silvia; Ysrraelit, María; Peeters, LiesbetIntroduction: 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.Publication Diagnosis and classification of optic neuritis(2022) Petzold, Axel; Frase, Clare; Abegg, Mathias; Alroughani, Raed; Alshowaeir, Daniah; Alvarenga, Regina; Andris, Cécile; Asgari, Nasrin; Barnett, Yael; Battistella, Roberto; Behbehan, Raed; Berger, Thomas; Bikbov, Mukharram; Biotti, Damien; Biousse, Valerie; Boschi, Antonella; Brazdil, Milan; Brezhnev, Andrei; Calabresi, Peter; Cordonnier, Monique; Costello, Fiona; Cruz, Franz; Provetti, Leonardo; Daoudi, Smail; Deschamps, Romain; De Seze, Jerome; Diem, Ricarda; Etemadifar, Masoud; Flores, José; Fonseca, Pedro; Frederiksen, Jette; Frohman, Elliot; Frohman, Teresa; Froment, Caroline; Fujihara, Kazuo; Gálvez, Alberto; Gouide, Riadh; Gracia, Fernando; Grigoriadis, Nikolaos; Guajardo, JoséThere is no consensus regarding the classification of optic neuritis, and precise diagnostic criteria are not available. This reality means that the diagnosis of disorders that have optic neuritis as the first manifestation can be challenging. Accurate diagnosis of optic neuritis at presentation can facilitate the timely treatment of individuals with multiple sclerosis, neuromyelitis optica spectrum disorder, or myelin oligodendrocyte glycoprotein antibody-associated disease. Epidemiological data show that, cumulatively, optic neuritis is most frequently caused by many conditions other than multiple sclerosis. Worldwide, the cause and management of optic neuritis varies with geographical location, treatment availability, and ethnic background. We have developed diagnostic criteria for optic neuritis and a classification of optic neuritis subgroups. Our diagnostic criteria are based on clinical features that permit a diagnosis of possible optic neuritis; further paraclinical tests, utilising brain, orbital, and retinal imaging, together with antibody and other protein biomarker data, can lead to a diagnosis of definite optic neuritis. Paraclinical tests can also be applied retrospectively on stored samples and historical brain or retinal scans, which will be useful for future validation studies. Our criteria have the potential to reduce the risk of misdiagnosis, provide information on optic neuritis disease course that can guide future treatment trial design, and enable physicians to judge the likelihood of a need for long-term pharmacological management, which might differ according to optic neuritis subgroups.