{"id":42398,"date":"2026-03-26T10:09:33","date_gmt":"2026-03-26T17:09:33","guid":{"rendered":"https:\/\/unlocked.microsoft.com\/?post_type=stories&#038;p=42398"},"modified":"2026-07-10T10:01:16","modified_gmt":"2026-07-10T17:01:16","slug":"cuando-los-datos-fluyen-mas-rapido-la-esperanza-tambien","status":"publish","type":"stories","link":"https:\/\/unlocked.microsoft.com\/es-mx\/cuando-los-datos-fluyen-mas-rapido-la-esperanza-tambien\/","title":{"rendered":"Cuando los datos fluyen m\u00e1s r\u00e1pido, la esperanza tambi\u00e9n"},"content":{"rendered":"\n<div\n    id=\"block_20d4a38b6a78fa1190304b63ad261276\"\n    class=\"split-feature split-feature--inset-image split-feature--right split-feature--bottom js-split-feature js-parallax \">\n    <div class=\"split-feature__content js-split-feature-content\">\n        <div class=\"transition--in-up\">\n            <div class=\"split-feature__header-wrapper\">\n                                <h1 class=\"split-feature__header split-feature__header__size-h2\">\n                                    Cuando los datos fluyen m\u00e1s r\u00e1pido, la esperanza tambi\u00e9n                                <\/h1>\n                                <\/div>\n                <div class=\"split-feature__excerpt-wrapper\">\n            <div class=\"split-feature__excerpt\">Las personas que viven con ELA est\u00e1n optando por compartir sus datos a trav\u00e9s de Neuromine, para que los investigadores puedan avanzar m\u00e1s r\u00e1pido, trabajando juntos<\/div>                                <\/div>\n    <\/div>\n<\/div>\n<div class=\"split-feature__media transition--media\">\n    \n<div class=\"unlocked-media media-image js-media-image\">\n                        <picture class=\"\">\n                        <source\n            srcset=\"https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-hero-01.jpg 1356w, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-hero-01-80x80.jpg 80w, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-hero-01-256x256.jpg 256w, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-hero-01-480x480.jpg 480w, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-hero-01-768x768.jpg 768w, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-hero-01-1024x1024.jpg 1024w\"\n                         \/>\n                        <img\n            src=\"https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-hero-01.jpg\"\n                                    width=\"1356\"\n            height=\"1356\"\n                        class=\"ratio--1-1\"\n            alt=\"Colorful digital brain visualization showing green neural pathways with pink, yellow, and blue activity patterns against black background.\"\n            loading=\"lazy\"\n            decoding=\"async\" \/>\n            <\/picture>\n            <\/div>\n<\/div>\n<\/div>\n\n\n<div\n    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focusable=\"false\" viewBox=\"0 0 24 24\" fill=\"none\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M7.35547 9.06274H3.41797V22.0002H7.35547V9.06274Z\" fill=\"currentColor\"\/><path d=\"M16.9197 9.06274C14.668 9.06274 14.0436 9.80074 13.543 10.7502V9.06274H9.60547V22.0002H13.543V14.6877C13.543 13.5627 13.543 12.4377 15.5117 12.4377C17.4805 12.4377 17.4805 13.5627 17.4805 14.6877V22.0002H21.418V14.6877C21.418 11.3127 20.8555 9.06274 16.9197 9.06274Z\" fill=\"currentColor\"\/><path d=\"M5.38672 7.9375C6.47403 7.9375 7.35547 7.05606 7.35547 5.96875C7.35547 4.88144 6.47403 4 5.38672 4C4.29941 4 3.41797 4.88144 3.41797 5.96875C3.41797 7.05606 4.29941 7.9375 5.38672 7.9375Z\" fill=\"currentColor\"\/><title id=\"icon-6a63571cf3c1b\">LinkedIn<\/title><\/svg>    <\/a>\n\n        \n    <\/div>\n\n    \n    <div\n        class=\"sr-text js-social-status\"\n        role=\"status\"\n    ><\/div>\n<\/section>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a63571cf3d25\"\n    class=\"spacer spacer-4 spacer-mobile-2\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_2cb959eaa0e331cc3e5b2fa8b543e8f1\"\n    class=\"publication-date \">\n    <p class=\"publication-date__text\">marzo 26, 2026<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a63571d00189\"\n    class=\"spacer spacer-4 spacer-mobile-2\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a63571d0039b\"\n    class=\"rich-text transition--in-up \">\n    <h4 class=\"--h4\">Se estima que 450.000 personas en todo el mundo viven con ELA.<\/h4>\n<p class=\"--h5\">No existe cura.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a63571d03781\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_6a63571d00dff\"\n    class=\"rich-text transition--in-up \">\n    <p>Para las personas que viven con ELA, cada segundo cuenta. Tras el diagn\u00f3stico, muchas personas solo tienen entre 2 y 5 a\u00f1os con sus amigos y seres queridos. Las familias aprenden un nuevo vocabulario \u2014sondas de alimentaci\u00f3n, dispositivos de movilidad, p\u00e9rdida de la voz\u2014 mientras que en los laboratorios de investigaci\u00f3n comienza a correr un reloj diferente, m\u00e1s silencioso. Los largos plazos de investigaci\u00f3n a menudo no se corresponden con la urgencia en la cl\u00ednica, y esa es la discrepancia que <a href=\"https:\/\/www.answerals.org\/\" target=\"_blank\" rel=\"noopener\">Answer ALS<\/a> se propuso cambiar.<\/p>\n<p>Answer ALS naci\u00f3 de la idea simple pero poderosa de que las personas con ELA son m\u00e1s que simples pacientes del sistema. Pueden contribuir activamente al progreso. Cuando las personas deciden compartir sus datos \u2014de forma segura, responsable y para el bien com\u00fan\u2014 se puede abrir un futuro muy diferente para la investigaci\u00f3n.<\/p>\n<p>Answer ALS une a investigadores, personas que viven con ELA y defensores en un esfuerzo abierto y colaborativo para acelerar el descubrimiento de tratamientos y curas. El objetivo es proporcionar acceso seguro a datos cl\u00ednicos y biol\u00f3gicos detallados, as\u00ed como a muestras biol\u00f3gicas asociadas, para que los cient\u00edficos puedan descubrir subgrupos biol\u00f3gicos, biomarcadores y dianas terap\u00e9uticas. Sin embargo, hist\u00f3ricamente, disponer de datos no era lo mismo que compartirlos de una manera que realmente ayudara a los investigadores a avanzar con mayor rapidez.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n<div\n    id=\"block_6a63571d04518\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n<div id=\"block_54fdc19e8bb048a625d8317c27a8a882\" class=\"video-player\">\n    <div id=\"videoplayer-1\" class=\"video-player__wrapper js-video-player theme-overlay  has-overlay-image\" aria-label=\"Ver \u201cCada segundo cuenta\u201d\">\n        <div\n            id=\"video-player-overlay-c65b9af4-2faa-4449-9a6d-1815ed00f144\"\n            class=\"video-player__overlay js-video-player-overlay\"\n            data-label-video-title=\"\u201cCada segundo cuenta\u201d\"\n            data-label-desktop=\"A man using assistive breathing equipment holds a young girl in a white shirt as they both look upward together indoors.\"\n            data-label-mobile=\"\">\n            <div 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31.4701 3.93011 30.935 3.05001C30.393 2.15865 29.6782 1.4136 28.735 0.86574C28.7158 0.854486 28.6973 0.84221 28.6787 0.829933C28.6759 0.827887 28.6757 0.822515 28.6704 0.808192C28.7128 0.805379 28.7521 0.800519 28.7918 0.800519C29.2534 0.800008 29.7153 0.797707 30.1769 0.802822C30.2506 0.803589 30.3335 0.823538 30.3961 0.85909C31.2761 1.35656 31.9547 2.03767 32.4869 2.84641C33.1276 3.81961 33.472 4.88336 33.5908 6.01206C33.7208 7.24564 33.6335 8.46182 33.2243 9.6491C32.8319 10.7875 32.1822 11.7786 31.2138 12.5782C30.9641 12.7843 30.6806 12.9559 30.4094 13.1393C30.3634 13.1705 30.3008 13.1976 30.2456 13.1979C29.7244 13.2025 29.203 13.2007 28.6602 13.2007Z\" fill=\"currentColor\"\/><title id=\"icon-6a63571d49643\">Audio Described<\/title><\/svg><\/a>\n            <\/div>\n    <\/div>\n\n\n<div\n    id=\"block_6a63571d498a0\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n<div id=\"block_6a63571d4a403\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a63571d49ddc\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_6a63571d49c2b\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a63571d4a29e\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_6a63571d4a044\"\n    class=\"rich-text transition--in-up \">\n    <h3 class=\"--h4\">El desaf\u00edo que cambi\u00f3 el ritmo<\/h3>\n<p>Answer ALS contaba con datos clave de gran valor: una vista multi-\u00f3mica a gran escala de la ELA en distintos participantes, incluyendo informaci\u00f3n como secuenciaci\u00f3n completa del genoma, datos cl\u00ednicos longitudinales detallados y modelos neuronales basados en c\u00e9lulas madre derivadas de pacientes. Sin embargo, el primer intento de compartirlo \u2014a trav\u00e9s de una instituci\u00f3n acad\u00e9mica\u2014 nunca se dise\u00f1\u00f3 para escalar.<\/p>\n<p>En la pr\u00e1ctica, funcionaba m\u00e1s como un repositorio b\u00e1sico de archivos, un lugar donde todo se almacenaba, pero no de una manera f\u00e1cil de explorar. Aunque los investigadores pod\u00edan, en teor\u00eda, seleccionar cohortes espec\u00edficas, hacerlo requer\u00eda conocimientos de l\u00ednea de comandos y un alto nivel de experiencia computacional. Para muchos cient\u00edficos b\u00e1sicos y cl\u00ednicos, incluso preguntas sencillas como \u201c\u00bfPuedo aislar datos sobre mujeres con ELA?\u201d resultaban dif\u00edciles de responder sin un apoyo t\u00e9cnico considerable. Esto limitaba la capacidad de la plataforma para permitir un descubrimiento eficiente y autosuficiente.<\/p>\n<p>Peor a\u00fan, el flujo de trabajo restring\u00eda de forma silenciosa qui\u00e9n pod\u00eda participar. Si no te sent\u00edas c\u00f3modo utilizando la l\u00ednea de comandos o no contabas con habilidades avanzadas en c\u00f3mputo y almacenamiento, este conjunto de datos \u201cabierto\u201d realmente no lo era. Y como la plataforma no estaba dise\u00f1ada para ser un recurso p\u00fablico y seguro \u2014el n\u00facleo mismo de la misi\u00f3n de Answer ALS\u2014, compartir la informaci\u00f3n a nivel global y a gran escala de manera responsable resultaba complicado.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n<div\n    id=\"block_6a63571d4a62d\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n<div id=\"block_6a63571d56e71\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a63571d5663a\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_d5f17d2cb402d4dcc7e0892185331813\"\n    class=\"media-block transition--media\">\n    \n<div class=\"unlocked-media media-video js-media-video\">\n            <div\n            class=\"media-video__wrapper\"\n                        role=\"presentation\"\n                    >\n\n                    <video\n                id=\"video-2\"\n            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class=\"rich-text transition--in-up \">\n    <h4 class=\"--h4\">Actuar con mayor rapidez, financiar proyectos m\u00e1s ambiciosos, colaborar sin reservas<\/h4>\n<p>Para Steve Gleason, esta es una directriz. <\/p>\n<p>El exjugador de los New Orleans Saints ha contribuido a definir las posibilidades para las personas con ELA. Diagnosticado en 2011, Steve convirti\u00f3 su propia experiencia en una plataforma para la acci\u00f3n, impulsando mejor apoyo, mejor tecnolog\u00eda y progreso m\u00e1s r\u00e1pido en la investigaci\u00f3n.<\/p>\n<blockquote>\n<h6 class=\"--h6\">\u201cYo digo que me diagnosticaron ELA para que millones de personas en el futuro no tengan que ser diagnosticadas\u201d, afirma Steve Gleason, fundador y miembro de la junta directiva de Answer ALS.<\/h6>\n<\/blockquote>\n<p>Muchos aficionados de la NFL lo recuerdan por un momento ic\u00f3nico: un despeje bloqueado en un partido de 2006. En 2012, una estatua de bronce a las afueras del Superdome lo inmortaliz\u00f3 en pleno bloqueo. Hoy, ayuda a superar las barreras que dificultan el acceso y el progreso de otras personas con ELA. <\/p>\n<p>Como defensor de la ELA desde hace mucho tiempo, Steve ha insistido en que las personas con ELA no deber\u00edan tener que esperar una cura para seguir viviendo una vida plena. A trav\u00e9s de otra organizaci\u00f3n sin fines de lucro, <a href=\"https:\/\/teamgleason.org\/\" target=\"_blank\" rel=\"noopener\">Team Gleason<\/a>, ha ayudado a miles de personas con ELA y otras afecciones neuromusculares a acceder a herramientas y servicios pr\u00e1cticos que protegen su independencia desde ahora mismo, especialmente en lo que respecta a la comunicaci\u00f3n y la movilidad. Centrada en conectar a las personas con tecnolog\u00eda y equipos de asistencia, la organizaci\u00f3n sin fines de lucro crea conciencia y acelera el impulso hacia la erradicaci\u00f3n de la ELA.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n<div\n    id=\"block_6a63571d570b8\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n<div id=\"block_a26691d75d5f1d59d91114822aff6934\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__center pullquote__h4\">\n        <blockquote class=\"quote quote__h4 quote--show-marks\">La tecnolog\u00eda me devuelve lo que la ELA me roba: mi voz, mi movilidad y mi capacidad de conectar y crear.<\/blockquote>\n                    <div class=\"quote__attribution\">\n                                    <div class=\"attribution-name\">Steve Gleason<\/div>\n                                                    <div class=\"attribution-description\">Fundador y miembro de la junta directiva de Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n<div\n    id=\"block_6a63571d58856\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n<div id=\"block_6a63571d590f6\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a63571d58bcf\" class=\"column column--empty\">\n    \n\n<div\n    id=\"block_6a63571d58ae3\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a63571d58fac\" class=\"column\">\n    \n\n<div\n    id=\"block_6a63571d58da3\"\n    class=\"rich-text transition--in-up \">\n    <h3 class=\"--h4\">Construido para investigadores y dise\u00f1ado para la velocidad.<\/h3>\n<p>Answer ALS transform\u00f3 la urgencia de Steve Gleason en Neuromine, una plataforma de investigaci\u00f3n compartida dise\u00f1ada para facilitar la b\u00fasqueda, el filtrado y el uso de datos de investigaci\u00f3n sobre la ELA. Esto ofrece a los investigadores acceso m\u00e1s sencillo, sin tener que lidiar con la infraestructura antes de poder combatir la enfermedad.<\/p>\n<p>Construido en torno a la privacidad, la seguridad y el respeto por las personas cuyos datos impulsan el trabajo, Neuromine se ejecuta en Azure. Con esta base, los investigadores pueden localizar segmentos relevantes del conjunto de datos mediante b\u00fasquedas y filtros, seleccionar cohortes espec\u00edficas e integrar los datos en su propio entorno de trabajo. La clara vinculaci\u00f3n con muestras biol\u00f3gicas y recursos de l\u00edneas celulares ayuda a los equipos a pasar del descubrimiento a la validaci\u00f3n, en lugar de quedarse estancados en un resultado interesante, pero sin un siguiente paso claro. La gobernanza y el acceso est\u00e1n estructurados para que el portal sea ampliamente utilizable, sin ralentizar la investigaci\u00f3n leg\u00edtima.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n<div\n    id=\"block_6a63571d592f0\"\n    class=\"spacer spacer-9 spacer-mobile-4\">\n<\/div>\n\n\n<div id=\"block_6a63571d6ec55\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a63571d59b30\" class=\"column column-vertical-align--top\">\n    \n\n\n<div\n    id=\"block_6a63571d59580\"\n    class=\"spacer spacer-11 spacer-mobile-0 spacer--desktop-only\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a63571d5976a\"\n    class=\"rich-text transition--in-up \">\n    <p class=\"--h4\">De 72 a dos semanas<\/p>\n<p class=\"unformatted\">Hist\u00f3ricamente, obtener un conjunto de datos analizable pod\u00eda llevar entre 12 y 18 meses. Con Neuromine, los investigadores pueden pasar de la hip\u00f3tesis al acceso a los datos \u2014y a las muestras biol\u00f3gicas correspondientes\u2014 en aproximadamente dos semanas.<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a63571d59989\"\n    class=\"spacer spacer-0 spacer-mobile-6 spacer--mobile-only\">\n<\/div>\n\n\n\n<\/div>\n\n\n<div id=\"block-column_6a63571d6eb54\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_893030e8c0b16bc071adb2b205111c3a\"\n    class=\"media-block transition--media ticss-f39380ac media-block--small\">\n    \n<div class=\"unlocked-media media-image js-media-image\">\n                        <picture class=\"\">\n                        <source\n            srcset=\"https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-graphs.jpg 1920w, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-graphs-256x144.jpg 256w, 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id=\"block_6a63571d6f39e\"\n    class=\"rich-text transition--in-up \">\n    <p>Neuromine ha impulsado m\u00e1s de 520 proyectos de investigaci\u00f3n, desde aulas de secundaria hasta prestigiosas instituciones de investigaci\u00f3n. Los datos de m\u00e1s de 1100 participantes de Answer ALS est\u00e1n ahora armonizados y disponibles en Neuromine, junto con la Colaboraci\u00f3n de Investigaci\u00f3n sobre ELA (ARC) del Instituto para el Desarrollo de Terapias contra la ELA, lo que permite a los investigadores analizar m\u00e1s de 2500 perfiles de pacientes con ELA en un solo lugar. Answer ALS estima que este modelo podr\u00eda acelerar los plazos de investigaci\u00f3n hasta en un 65 % en los pr\u00f3ximos dos a\u00f1os. Por primera vez, los investigadores pueden analizar la ELA con una escala y profundidad que revela patrones que ning\u00fan ser humano podr\u00eda detectar por s\u00ed solo.<\/p>\n<p>Los enfoques de aprendizaje autom\u00e1tico est\u00e1n sacando a la luz relaciones gen\u00e9ticas previamente invisibles, incluyendo un prometedor conjunto de genes llamados nucleoporinas, que regulan el tr\u00e1fico dentro y fuera del n\u00facleo celular. Los primeros indicios sugieren que las combinaciones de mutaciones en estos genes podr\u00edan ayudar a explicar por qu\u00e9 algunas personas se deterioran r\u00e1pidamente mientras que otras viven muchos a\u00f1os. Ahora, los equipos pueden validar esos hallazgos transformando las c\u00e9lulas sangu\u00edneas de los pacientes en neuronas y, a continuaci\u00f3n, utilizando microscopios rob\u00f3ticos y biosensores para observar c\u00f3mo se desarrolla la ELA dentro de la c\u00e9lula en tiempo real.<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a63571d6f652\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a63571d6f838\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n<div id=\"block_6a63571d90f33\" class=\"row row--space-between column__container mobile-column-gap-6 column--layout-33-33-33\">\n    \n<div id=\"block-column_6a63571d7aad2\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_bfd05609e059167b7d9d60609db571f4\"\n    class=\"media-block transition--media\">\n    \n<div class=\"unlocked-media media-image js-media-image unlocked-media--has-caption\">\n    <div class=\"unlocked-media__content\">                    <picture class=\"\">\n                        <source\n            srcset=\"https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-quote-01.jpg 881w, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-quote-01-80x80.jpg 80w, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-quote-01-256x256.jpg 256w, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-quote-01-480x479.jpg 480w, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-quote-01-768x767.jpg 768w\"\n                        sizes=\"(max-width: 767px) 92vw, 85vw\" \/>\n                        <img\n            src=\"https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-quote-01.jpg\"\n                                    width=\"881\"\n            height=\"880\"\n                        class=\"ratio--1-1\"\n            alt=\"Middle-aged woman with blonde hair and black-rimmed glasses wearing a tan jacket, looking thoughtfully to the side.\"\n            loading=\"lazy\"\n            decoding=\"async\" \/>\n            <\/picture>\n        <\/div>    \n<div class=\"media-caption\">\n            <div class=\"media-caption__caption\">Middle-aged woman with blonde hair and black-rimmed glasses wearing a tan jacket, looking thoughtfully to the side.<\/div>\n        <\/div>\n<\/div>\n<\/div>\n\n\n\n<div\n    id=\"block_6a63571d7a4ed\"\n    class=\"spacer spacer-2 spacer-mobile-2\">\n<\/div>\n\n\n\n\n<div id=\"block_9146b64f9edf00b84aecd9ad4c088a96\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__left pullquote__h5\">\n        <blockquote class=\"quote quote__h5 quote--show-marks\">Todos los participantes sab\u00edan que tal vez no estar\u00edan presentes para ver los resultados. Su compromiso fue simplemente extraordinario.<\/blockquote>\n                    <div class=\"quote__attribution\">\n                                    <div class=\"attribution-name\">Clare Durrett<\/div>\n                                                    <div class=\"attribution-description\">Director general, Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a63571d85b00\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_f8f940b3c573a52187dde93dc821fac0\"\n    class=\"media-block transition--media\">\n    \n<div class=\"unlocked-media media-image js-media-image unlocked-media--has-caption\">\n    <div class=\"unlocked-media__content\">                    <picture class=\"\">\n                        <source\n            srcset=\"https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-quote-02.jpg 1192w, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-quote-02-80x80.jpg 80w, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-quote-02-256x256.jpg 256w, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-quote-02-480x480.jpg 480w, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-quote-02-768x767.jpg 768w, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-quote-02-1024x1023.jpg 1024w\"\n                        sizes=\"(max-width: 767px) 92vw, 85vw\" \/>\n                        <img\n            src=\"https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-quote-02.jpg\"\n                                    width=\"1192\"\n            height=\"1191\"\n                        class=\"ratio--1-1\"\n            alt=\"Middle-aged woman with blonde hair and glasses wearing black shirt in modern office with computers and framed artwork.\"\n            loading=\"lazy\"\n            decoding=\"async\" \/>\n            <\/picture>\n        <\/div>    \n<div class=\"media-caption\">\n            <div class=\"media-caption__caption\">Middle-aged woman with blonde hair and glasses wearing black shirt in modern office with computers and framed artwork.<\/div>\n        <\/div>\n<\/div>\n<\/div>\n\n\n\n<div\n    id=\"block_6a63571d853e1\"\n    class=\"spacer spacer-2 spacer-mobile-2\">\n<\/div>\n\n\n\n\n<div id=\"block_ab7f6d62f593b6149cc4b7a580118282\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__left pullquote__h5\">\n        <blockquote class=\"quote quote__h5 quote--show-marks\">Dado que Neuromine puede proporcionar datos de forma r\u00e1pida y gratuita a nivel mundial, reducir\u00e1 el tiempo de descubrimiento en meses, si no en a\u00f1os.<\/blockquote>\n                    <div class=\"quote__attribution\">\n                                    <div class=\"attribution-name\">Terri Thompson, PhD<\/div>\n                                                    <div class=\"attribution-description\">Director de Gesti\u00f3n de Datos y gerente de programa Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a63571d90dfb\" class=\"column\">\n    \n\n<div\n    id=\"block_4658c77de9980f12cf8fd049110cfed5\"\n    class=\"media-block transition--media\">\n    \n<div class=\"unlocked-media media-image js-media-image\">\n                        <picture class=\"\">\n                        <source\n            srcset=\"https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-julia-01.jpg 772w, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-julia-01-80x80.jpg 80w, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-julia-01-256x256.jpg 256w, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-julia-01-480x481.jpg 480w, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-julia-01-768x769.jpg 768w\"\n                        sizes=\"(max-width: 767px) 92vw, 85vw\" \/>\n                        <img\n            src=\"https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-julia-01.jpg\"\n                                    width=\"772\"\n            height=\"773\"\n                        class=\"ratio--1-1\"\n            alt=\"Woman with wavy brown hair wearing a white patterned blouse standing in a scientific laboratory with equipment on shelves behind her.\"\n            loading=\"lazy\"\n            decoding=\"async\" \/>\n            <\/picture>\n            <\/div>\n<\/div>\n\n\n\n<div\n    id=\"block_6a63571d9073b\"\n    class=\"spacer spacer-2 spacer-mobile-2\">\n<\/div>\n\n\n\n\n<div id=\"block_5f755fc9d33e4bde3ad77c470f3fe061\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__left pullquote__h5\">\n        <blockquote class=\"quote quote__h5 quote--show-marks\">Estoy muy entusiasmada con algunos de los resultados recientes en los que hemos podido diferenciar las c\u00e9lulas procedentes de pacientes con ELA utilizando los datos de Answer ALS.<\/blockquote>\n                    <div class=\"quote__attribution\">\n                                    <div class=\"attribution-name\">Julia Kaye, PhD<\/div>\n                                                    <div class=\"attribution-description\">Investigadora, Gladstone Institutes<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n<div\n    id=\"block_6a63571d9113f\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n<div id=\"block_6a63571d92769\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a63571d914a0\" class=\"column column--empty\">\n    \n\n<div\n    id=\"block_6a63571d913af\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a63571d92674\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_6a63571d91654\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n\n<div\n    id=\"block_6a63571d9183d\"\n    class=\"rich-text transition--in-up \">\n    <h3 class=\"--h4\">Datos abiertos, impulso real<\/h3>\n<p>Est\u00e1 surgiendo un nuevo modelo para la investigaci\u00f3n de enfermedades raras. Un modelo que aboga por los datos abiertos, la computaci\u00f3n avanzada y la innovaci\u00f3n impulsada por la comunidad, trabajando juntos para acortar el camino desde la hip\u00f3tesis hasta el conocimiento. Para las personas que viven con ELA, que a menudo no tienen tiempo para esperar, esta aceleraci\u00f3n representa la posibilidad de un camino m\u00e1s claro hacia la cura.<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a63571d91a89\"\n    class=\"spacer spacer-4 spacer-mobile-2\">\n<\/div>\n\n\n\n<nav\n\tclass=\"story-tags ticss-db52dfad\"\n\taria-labelledby=\"block_b04989276ca18e08f5de7d9c081c8e49-topics-label\"\n\tid=\"block_b04989276ca18e08f5de7d9c081c8e49\">\n\t<div class=\"story-tags__inner\">\n\t\t<span class=\"story-tags__label\" id=\"block_b04989276ca18e08f5de7d9c081c8e49-topics-label\">Topics:<\/span>\n\t\t\t\t\t\t<a class=\"story-tags__link\" href=\"https:\/\/unlocked.microsoft.com\/es-mx\/tag\/atencion-medica\/\">Atenci\u00f3n m\u00e9dica<\/a>\n\t\t\t\t\t\t\t\t<span class=\"story-tags__pair\">\n\t\t\t\t\t<a class=\"story-tags__link\" href=\"https:\/\/unlocked.microsoft.com\/es-mx\/tag\/datos\/\">Datos<\/a>\n\t\t\t\t\t<a class=\"story-tags__link\" href=\"https:\/\/unlocked.microsoft.com\/es-mx\/tag\/ia\/\">IA<\/a>\n\t\t\t\t<\/span>\n\t\t\t\t\t<\/div>\n<\/nav>\n\n\n<\/div>\n\n\n<\/div>\n\n\n<div\n    id=\"block_6a63571d9299a\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n<div id=\"block_c8b3645e3874ae01134933d0803b9778\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__center pullquote__h4\">\n        <blockquote class=\"quote quote__h4 quote--show-marks\"><span data-teams=\"true\">Convierte las historias individuales en poder colectivo. Los datos abiertos lo aceleran todo.<\/span><\/blockquote>\n                    <div class=\"quote__attribution\">\n                                    <div class=\"attribution-name\">Steve Gleason<\/div>\n                                                    <div class=\"attribution-description\">Fundador y miembro de la junta directiva de Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n<div\n    id=\"block_6a63571d92f7f\"\n    class=\"spacer spacer-9 spacer-mobile-6\">\n<\/div>\n\n","protected":false},"excerpt":{"rendered":"<p>Las personas que viven con ELA est\u00e1n optando por compartir sus datos a trav\u00e9s de Neuromine, para que los investigadores puedan avanzar m\u00e1s r\u00e1pido, trabajando juntos<\/p>\n","protected":false},"parent":0,"menu_order":0,"template":"","meta":{"_acf_changed":true},"tags":[489,290,346],"class_list":["post-42398","stories","type-stories","status-publish","hentry","tag-atencion-medica","tag-datos","tag-ia","collections-thriving-communities","entry","page-content"],"acf":{"featured_media_featured_scrim_color":"#000000","featured_media_card_ratio":"1-1","featured_media_card_image":30532,"featured_media_card_video":"","featured_media_card_video_button_desc":"","featured_media_featured_image":30559,"featured_media_featured_video":"","featured_media_featured_video_button_desc":"","featured_media_featured_headline":"","featured_media_featured_excerpt":"","featured_media_search_image":29489,"featured_media_search_card_image":30586,"featured_media_search_card_video":"","featured_media_search_card_video_button_desc":"","disable_segoe_serif":false,"settings":{"external_url":[""],"collections":6}},"_links":{"self":[{"href":"https:\/\/unlocked.microsoft.com\/es-mx\/wp-json\/wp\/v2\/stories\/42398","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/unlocked.microsoft.com\/es-mx\/wp-json\/wp\/v2\/stories"}],"about":[{"href":"https:\/\/unlocked.microsoft.com\/es-mx\/wp-json\/wp\/v2\/types\/stories"}],"wp:attachment":[{"href":"https:\/\/unlocked.microsoft.com\/es-mx\/wp-json\/wp\/v2\/media?parent=42398"}],"wp:term":[{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/unlocked.microsoft.com\/es-mx\/wp-json\/wp\/v2\/tags?post=42398"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}