{"id":42044,"date":"2026-03-26T10:09:33","date_gmt":"2026-03-26T17:09:33","guid":{"rendered":"https:\/\/unlocked.microsoft.com\/?post_type=stories&#038;p=42044"},"modified":"2026-07-10T10:09:45","modified_gmt":"2026-07-10T17:09:45","slug":"cuando-los-datos-se-mueven-mas-rapido-la-esperanza-tambien-lo-hace","status":"publish","type":"stories","link":"https:\/\/unlocked.microsoft.com\/es\/cuando-los-datos-se-mueven-mas-rapido-la-esperanza-tambien-lo-hace\/","title":{"rendered":"Cuando los datos se mueven m\u00e1s r\u00e1pido, la esperanza tambi\u00e9n lo hace"},"content":{"rendered":"\n<div\n    id=\"block_d7f617d2e0d1591189a182a0186ce7a6\"\n    class=\"split-feature split-feature--inset-image split-feature--derecha split-feature--abajo 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 se mueven m\u00e1s r\u00e1pido, la esperanza tambi\u00e9n lo hace                                <\/h1>\n                                <\/div>\n                <div class=\"split-feature__excerpt-wrapper\">\n            <div class=\"split-feature__excerpt\">Las personas que padecen ELA han decidido compartir sus datos a trav\u00e9s de Neuromine, para que los investigadores puedan avanzar m\u00e1s r\u00e1pido, unidos<\/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\n\n<div\n    id=\"block_6a8cefe6044b3\"\n    class=\"spacer spacer-6 spacer-mobile-2\">\n<\/div>\n\n\n\n\n<div id=\"block_6a8cefe60aae5\" class=\"row row--space-between column__container mobile-column-gap-1 column--layout-40-60\">\n    \n<div id=\"block-column_6a8cefe606aa4\" class=\"column column-vertical-align--top\">\n    \n<div\n    id=\"block_305739cf2814234b636dda4c13f89fd6\"\n    class=\"share-block \">\n    \n<section\n    class=\"social-share js-social-share social-share--left\"\n        aria-label=\"Comparte Cuando los datos se mueven m\u00e1s r\u00e1pido, la esperanza tambi\u00e9n lo hace en las redes sociales\"\n    tabindex=\"0\"\n    >\n\n    <div class=\"social-share__item social-share__btn--link-copied js-social-share-link-copied\"\n        aria-hidden=\"true\"\n    >\n        <div class=\"social-share__btn--link-copied__wrapper\">\n            <svg class=\"svg-icon\"  width=\"10\" height=\"8\" 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<svg class=\"svg-icon\" width=\"24\" height=\"24\" aria-hidden=\"true\" aria-labelledby=\"icon-6a8cefe605ba3\" role=\"img\" 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-6a8cefe605ba3\">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_6a8cefe605ca5\"\n    class=\"spacer spacer-4 spacer-mobile-2\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_8861554af1275a3147e9b71eac89554e\"\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_6a8cefe60634b\"\n    class=\"spacer spacer-4 spacer-mobile-2\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8cefe606545\"\n    class=\"rich-text transition--in-up \">\n    <h4 class=\"--h4\">Se estima que 450\u00a0000 personas en todo el mundo padecen ELA.<\/h4>\n<p class=\"--h5\">No hay cura.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a8cefe60a98d\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_6a8cefe606fc2\"\n    class=\"rich-text transition--in-up \">\n    <p>Para las personas que padecen ELA cada segundo cuenta. Tras el diagn\u00f3stico, muchas personas solo disponen de entre 2 y 5 a\u00f1os para pasar con sus amigos y seres queridos. Las familias aprenden un nuevo vocabulario: sondas de alimentaci\u00f3n, dispositivos de movilidad, p\u00e9rdida de la voz, mientras, en los laboratorios de investigaci\u00f3n, empieza a avanzar un reloj diferente, m\u00e1s silencioso. Los largos periodos de investigaci\u00f3n no suelen ajustarse a la urgencia en la cl\u00ednica y este es precisamente el desfase que <a href=\"https:\/\/www.answerals.org\/\" target=\"_blank\" rel=\"noopener\">Answer ALS<\/a>se ha propuesto cambiar.<\/p>\n<p>Answer ALS empez\u00f3 con la idea simple pero poderosa de que las personas que padecen ELA son m\u00e1s que simples pacientes dentro del sistema. Cuando las personas deciden compartir sus datos, de forma segura, responsable y para el bien com\u00fan, se abre la puerta a un futuro muy diferente para la investigaci\u00f3n.<\/p>\n<p>Answer ALS re\u00fane a investigadores, personas que padecen ELA y defensores de la causa en un esfuerzo com\u00fan de colaboraci\u00f3n para acelerar el descubrimiento de tratamientos y curas. El objetivo es dar acceso seguro a datos cl\u00ednicos y biol\u00f3gicos detallados, as\u00ed como muestras biol\u00f3gicas asociadas, para que los cient\u00edficos puedan descubrir subgrupos biol\u00f3gicos, biomarcadores y objetivos terap\u00e9uticos. Pero, hist\u00f3ricamente, disponer de datos no equival\u00eda a compartirlos de una forma que realmente ayudara a los investigadores a avanzar m\u00e1s r\u00e1pido.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8cefe60b77e\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n\n\n<div id=\"block_325d33256a7d15be30f0457656ddab05\" class=\"video-player\">\n    <div id=\"videoplayer-1\" class=\"video-player__wrapper js-video-player theme-overlay  has-overlay-image\" aria-label=\"Ve \u201cCada segundo cuenta\u201d\">\n        <div\n            id=\"video-player-overlay-47d429d2-d1c9-4884-8fdc-b53ed2cd2ea3\"\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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fill=\"currentColor\"\/><path d=\"M32.0086 0.799086C32.0792 0.799086 32.1241 0.799086 32.169 0.799086C32.5478 0.799086 32.9271 0.813153 33.3048 0.794226C33.5708 0.780926 33.7836 0.856633 33.9947 0.995004C35.0991 1.72011 35.8708 2.68206 36.3779 3.83199C36.8655 4.9387 37.0315 6.09606 36.9977 7.28385C36.9695 8.28416 36.7852 9.25634 36.3712 10.1838C35.8329 11.3902 35.0132 12.3918 33.816 13.1108C33.7118 13.1734 33.6065 13.2036 33.4801 13.2021C33.0415 13.1962 32.6029 13.1998 32.1643 13.1998C32.1202 13.1998 32.0762 13.1998 31.9961 13.1998C32.1806 13.0816 32.3375 12.9885 32.486 12.8849C33.4123 12.2396 34.0906 11.4125 34.571 10.4428C34.9404 9.69754 35.1643 8.91335 35.2565 8.09975C35.456 6.33827 35.2393 4.63946 34.2998 3.06341C33.7545 2.14852 33.0194 1.38966 32.0471 0.839754C32.0396 0.835917 32.0352 0.827732 32.0086 0.799086Z\" fill=\"currentColor\"\/><path d=\"M28.6602 13.2007C28.9184 13.0224 29.1672 12.8692 29.3936 12.6917C30.4986 11.8247 31.2113 10.7249 31.6103 9.44678C31.9755 8.2769 32.0442 7.08476 31.8954 5.87855C31.7718 4.87875 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-6a8cefe669a56\">Audio Described<\/title><\/svg><\/a>\n            <\/div>\n    <\/div>\n\n\n\n\n<div\n    id=\"block_6a8cefe669c78\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n\n\n<div id=\"block_6a8cefe66a741\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a8cefe66a224\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_6a8cefe66a12f\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a8cefe66a61d\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_6a8cefe66a3c6\"\n    class=\"rich-text transition--in-up \">\n    <h3 class=\"--h4\">El reto que cambi\u00f3 el ritmo<\/h3>\n<p>Answer ALS ten\u00eda datos vitales: una visi\u00f3n masiva y multi\u00f3mica de la ELA en todos los participantes, incluidos datos como la secuenciaci\u00f3n del genoma completo, una amplia informaci\u00f3n cl\u00ednica longitudinal y modelos neuronales basados en c\u00e9lulas madre derivadas de pacientes. Pero, el primer intento por compartirlos a trav\u00e9s de una instituci\u00f3n acad\u00e9mica, nunca se dise\u00f1\u00f3 a gran escala.<\/p>\n<p>En la pr\u00e1ctica, funcionaba m\u00e1s bien como un repositorio b\u00e1sico de archivos o un lugar donde cab\u00eda todo, pero no era f\u00e1cil de navegar por \u00e9l. Mientras los investigadores pod\u00edan seleccionar t\u00e9cnicamente cohortes espec\u00edficas, para ello era necesario tener conocimientos de la l\u00ednea de comandos y un alto nivel de experiencia inform\u00e1tica. Para muchos investigadores b\u00e1sicos y m\u00e9dicos, incluso preguntas sencillas como \u00ab\u00bfPuedo aislar los datos sobre mujeres con ELA?\u00bb resultaban dif\u00edciles de responder sin un soporte t\u00e9cnico considerable. Esto limitaba la capacidad de la plataforma para facilitar un descubrimiento eficiente y de autoservicio.<\/p>\n<p>Peor a\u00fan, el flujo de trabajo limitaba de forma silenciosa qui\u00e9n pod\u00eda participar. Si no te sent\u00edas c\u00f3modo con la l\u00ednea de comandos o no ten\u00edas conocimientos avanzados de computaci\u00f3n y almacenamiento, este conjunto de datos \u00ababierto\u00bb no era realmente abierto. Y dado que la plataforma no se hab\u00eda dise\u00f1ado para ser un recurso p\u00fablico y seguro (el n\u00facleo mismo del objetivo de Answer ALS), resultaba dif\u00edcil compartir a gran escala de forma responsable.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8cefe66a99d\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n\n\n<div id=\"block_6a8cefe677e76\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a8cefe6776a7\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_164ac6b4aafd236f0f6384bd9e9b7c9a\"\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                class=\"ratio--4-5\"\n      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 <h4 class=\"--h4\">Mu\u00e9vete con mayor rapidez, invierte m\u00e1s y colabora sin descanso<\/h4>\n<p>Para Steve Gleason, esto es un mandato.<\/p>\n<p>El antiguo safety de los New Orleans Saints ha contribuido a definir lo que es posible para las personas que padecen ELA. Diagnosticado en 2011, Steve convirti\u00f3 su experiencia en una plataforma para la acci\u00f3n, impulsando un mayor apoyo, una mejor tecnolog\u00eda y un avance m\u00e1s r\u00e1pido en la investigaci\u00f3n.<\/p>\n<blockquote>\n<h6 class=\"--h6\">\u00abHablar de mi diagn\u00f3stico con ELA es una forma de ayudar a que millones de personas en el futuro no lo reciban\u00bb, fundador y miembro de la junta directiva de Answer ALS.<\/h6>\n<\/blockquote>\n<p>Muchos seguidores de la NFL lo recuerdan como un momento emblem\u00e1tico, un despeje bloqueado en un partido de 2006. En 2012, una estatua de bronce situada frente al Superdome lo inmortaliz\u00f3 en pleno bloqueo. Hoy en d\u00eda, ayuda a superar las barreras que dificultan el acceso y el progreso de otras personas con ELA.<\/p>\n<p>Como defensor de ELA desde hace mucho tiempo, Steve ha insistido en que las personas que padecen ELA no deber\u00edan tener que esperar a que se encuentre una cura para seguir viviendo una vida plena. A trav\u00e9s de otra organizaci\u00f3n sin \u00e1nimo de lucro, <a href=\"https:\/\/teamgleason.org\/\" target=\"_blank\" rel=\"noopener\">Team Gleason<\/a>, ha ayudado a miles de personas con ELA y otras enfermedades neuromusculares a acceder a herramientas y servicios pr\u00e1cticos que protegen su independencia desde ya mismo, especialmente en lo que respecta a la comunicaci\u00f3n y la movilidad. Centrada en poner en contacto a las personas con tecnolog\u00eda y equipos de apoyo, la organizaci\u00f3n sin \u00e1nimo de lucro sirve para concienciar y acelera el impulso para acabar con la ELA.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8cefe6780e6\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n\n\n<div id=\"block_cb215418b0ffb3815444d85bc40ab6d6\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__center pullquote__h4\">\n        <blockquote class=\"quote quote__h4 quote--show-marks\">La tecnolog\u00eda te devuelve lo que ELA te quita. Mi voz, mi movilidad y mi capacidad para 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, Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8cefe679859\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n\n\n<div id=\"block_6a8cefe67a126\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a8cefe679c69\" class=\"column column--empty\">\n    \n\n<div\n    id=\"block_6a8cefe679b7d\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a8cefe679fed\" class=\"column\">\n    \n\n<div\n    id=\"block_6a8cefe679e27\"\n    class=\"rich-text transition--in-up \">\n    <h3 class=\"--h4\">Creado para investigadores y dise\u00f1ado para la velocidad<\/h3>\n<p>Answer ALS plasm\u00f3 la urgente necesidad de Steve Gleason en Neuromine, un centro de investigaci\u00f3n compartido dise\u00f1ado para facilitar la b\u00fasqueda, el filtrado y el uso de los datos de investigaci\u00f3n sobre la ELA. Esto ofrece a los investigadores un mejor enfoque sin que tengan que luchar con problemas de infraestructura para poder enfrentarse a la enfermedad.<\/p>\n<p>Neuromine, dise\u00f1ado en torno a la privacidad, la seguridad y el respeto hacia las personas cuyos datos son la base del trabajo, se ejecuta en Azure. Sobre esta base, los investigadores pueden localizar segmentos relevantes del conjunto de datos mediante b\u00fasquedas y filtros, extraer cohortes espec\u00edficas e incorporar los datos a 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 \u00abresultado interesante, siguiente paso poco claro\u00bb. 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\n\n<div\n    id=\"block_6a8cefe67a367\"\n    class=\"spacer spacer-9 spacer-mobile-4\">\n<\/div>\n\n\n\n\n<div id=\"block_6a8cefe69ca1c\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a8cefe67abba\" class=\"column column-vertical-align--top\">\n    \n\n\n<div\n    id=\"block_6a8cefe67a633\"\n    class=\"spacer spacer-11 spacer-mobile-0 spacer--desktop-only\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8cefe67a7fd\"\n    class=\"rich-text transition--in-up \">\n    <p class=\"--h4\">De 72 a dos semanas<\/p>\n<p class=\"unformatted\">Hist\u00f3ricamente, llegar a analizar conjuntos de datos pod\u00eda tardar entre 12 y18 meses. Con Neuromine, pueden pasar de la hip\u00f3tesis al acceso a los datos, y a las muestras biol\u00f3gicas coincidentes, en unas dos semanas.<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8cefe67aa2c\"\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_6a8cefe69c8e9\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_5a4bcb5eabeb6f4e8f594be398bfc28f\"\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, https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-graphs-480x270.jpg 480w, 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5.30323L3.35373 4.59612C3.15847 4.40086 3.15847 4.08427 3.35373 3.88901L6.88926 0.353478Z\" fill=\"currentColor\"\/><\/svg>    <\/span>\n    <span class=\"sr-text js-button-label\">\n        pause    <\/span>\n<\/button>\n    <\/div>    \n<div class=\"media-caption\">\n            <div class=\"media-caption__caption\">Neuronas vivas con ALS<\/div>\n        <\/div>\n<\/div>\n<\/div>\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8cefe69cd26\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n\n\n<div id=\"block_6a8cefe69da04\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a8cefe69d11d\" class=\"column column--empty\">\n    \n\n<div\n    id=\"block_6a8cefe69d02b\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a8cefe69d91a\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_6a8cefe69d2f2\"\n    class=\"rich-text transition--in-up \">\n    <p>Neuromine ha hecho posible m\u00e1s de 520 proyectos de investigaci\u00f3n, que abarcan desde aulas de secundaria hasta instituciones de investigaci\u00f3n de primera l\u00ednea. Los datos de m\u00e1s de 1.100 participantes en Answer ALS est\u00e1n ahora armonizados y disponibles en Neuromine junto con los de ALS Research Collaborative (ARC) de ALS Therapy Development Institute, lo que permite a los investigadores examinar m\u00e1s de 2.500 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\u00a0% durante los pr\u00f3ximos dos a\u00f1os. Por primera vez, los investigadores pueden analizar la ELA a una escala y con una profundidad que revelan patrones que ning\u00fan ser humano podr\u00eda detectar por s\u00ed solo.<\/p>\n<p>Los enfoques del aprendizaje autom\u00e1tico est\u00e1n revelando relaciones gen\u00e9ticas que antes eran invisibles, incluido un prometedor conjunto de genes denominados nucleoporinas, que regulan el tr\u00e1fico dentro y fuera del n\u00facleo celular. Los primeros indicios sugieren que 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 estos datos transformando las c\u00e9lulas sangu\u00edneas de los pacientes en neuronas y utilizando luego microscopios rob\u00f3ticos y biosensores para observar c\u00f3mo se desarrolla la ELA en el interior de la c\u00e9lula en tiempo real.<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8cefe69d5ac\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8cefe69d799\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n<div id=\"block_6a8cefe6c8670\" class=\"row row--space-between column__container mobile-column-gap-6 column--layout-33-33-33\">\n    \n<div id=\"block-column_6a8cefe6ae441\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_2e77bbd6b490f34ade34f4fcd6811bbb\"\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-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=\"Una mujer de mediana edad, rubia y con gafas de montura negra, que lleva una chaqueta de color beige, mira pensativa hacia un lado.\"\n            loading=\"lazy\"\n            decoding=\"async\" \/>\n            <\/picture>\n            <\/div>\n<\/div>\n\n\n\n<div\n    id=\"block_6a8cefe6addaa\"\n    class=\"spacer spacer-2 spacer-mobile-2\">\n<\/div>\n\n\n\n\n<div id=\"block_bfc2617078da8d9e49137874bcfefff5\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__left pullquote__h5\">\n        <blockquote class=\"quote quote__h5 quote--show-marks\">Todos los que participaron sab\u00edan que quiz\u00e1 no estar\u00edan para ver los resultados. Su compromiso fue sencillamente extraordinario.<\/blockquote>\n                    <div class=\"quote__attribution\">\n                                    <div class=\"attribution-name\">Clare Durrett<\/div>\n                                                    <div class=\"attribution-description\">Directora general, Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a8cefe6bc501\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_f5168d43b8a1e4ce624bc10681eb4cab\"\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-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=\"Una mujer de mediana edad, rubia y con gafas, vestida con una camisa negra, en una oficina moderna con ordenadores y obras de arte enmarcadas.\"\n            loading=\"lazy\"\n            decoding=\"async\" \/>\n            <\/picture>\n            <\/div>\n<\/div>\n\n\n\n<div\n    id=\"block_6a8cefe6bbe71\"\n    class=\"spacer spacer-2 spacer-mobile-2\">\n<\/div>\n\n\n\n\n<div id=\"block_e55be02275caaa0def554e5e3e5501c0\" 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 suministrar datos de forma r\u00e1pida y gratuita a nivel global, reducir\u00e1 el tiempo de investigaci\u00f3n 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, administrador de gesti\u00f3n de datos y programas Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a8cefe6c8538\" class=\"column\">\n    \n\n<div\n    id=\"block_adebd0bec5dd2df7d5d7347cd828d993\"\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=\"Una mujer de pelo casta\u00f1o ondulado que lleva una blusa blanca estampada, de pie en un laboratorio cient\u00edfico con equipos en las estanter\u00edas a sus espaldas.\"\n            loading=\"lazy\"\n            decoding=\"async\" \/>\n            <\/picture>\n            <\/div>\n<\/div>\n\n\n\n<div\n    id=\"block_6a8cefe6c7f0f\"\n    class=\"spacer spacer-2 spacer-mobile-2\">\n<\/div>\n\n\n\n\n<div id=\"block_0f5c9f089b9e869c639f015de65cf8e3\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__left pullquote__h5\">\n        <blockquote class=\"quote quote__h5 quote--show-marks\">Estoy muy ilusionado con algunos de los resultados recientes, en los que hemos podido identificar 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 cient\u00edfica, Gladstone Institutes<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8cefe6c88f8\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n\n\n<div id=\"block_6a8cefe6ca072\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a8cefe6c8d26\" class=\"column column--empty\">\n    \n\n<div\n    id=\"block_6a8cefe6c8c32\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a8cefe6c9f56\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_6a8cefe6c8ee9\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n\n<div\n    id=\"block_6a8cefe6c90ba\"\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. Uno que aboga por los datos abiertos, la computaci\u00f3n avanzada y la innovaci\u00f3n impulsada por la comunidad, que trabajan conjuntamente para reducir el camino de la hip\u00f3tesis al conocimiento. Para las personas que padecen ELA, que no tienen margen de tiempo para esperar, esta aceleraci\u00f3n es la posibilidad de un camino m\u00e1s claro hacia una cura.<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8cefe6c92f8\"\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_ac42399b5e4a54f2ff88e7472758e5b2-topics-label\"\n\tid=\"block_ac42399b5e4a54f2ff88e7472758e5b2\">\n\t<div class=\"story-tags__inner\">\n\t\t<span class=\"story-tags__label\" id=\"block_ac42399b5e4a54f2ff88e7472758e5b2-topics-label\">Topics:<\/span>\n\t\t\t\t\t\t<a class=\"story-tags__link\" href=\"https:\/\/unlocked.microsoft.com\/es\/tag\/datos\/\">Datos<\/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\/tag\/ia\/\">IA<\/a>\n\t\t\t\t\t<a class=\"story-tags__link\" href=\"https:\/\/unlocked.microsoft.com\/es\/tag\/salud\/\">Salud<\/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\n\n<div\n    id=\"block_6a8cefe6ca2f4\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n\n\n<div id=\"block_616cf63b9a7243795c35b0c7526276ac\" 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, Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8cefe6caa4a\"\n    class=\"spacer spacer-9 spacer-mobile-6\">\n<\/div>\n\n","protected":false},"excerpt":{"rendered":"<p>Las personas que padecen ELA han decidido compartir sus datos a trav\u00e9s de Neuromine, para que los investigadores puedan avanzar m\u00e1s r\u00e1pido, unidos<\/p>\n","protected":false},"parent":0,"menu_order":0,"template":"","meta":{"_acf_changed":true},"tags":[278,342,418],"class_list":["post-42044","stories","type-stories","status-publish","hentry","tag-datos","tag-ia","tag-salud","collections-thriving-communities","entry","page-content"],"acf":{"featured_media_featured_scrim_color":"#000000","featured_media_card_ratio":"1-1","featured_media_card_image":30531,"featured_media_card_video":"","featured_media_card_video_button_desc":"","featured_media_featured_image":30558,"featured_media_featured_video":"","featured_media_featured_video_button_desc":"","featured_media_featured_headline":"","featured_media_featured_excerpt":"","featured_media_search_image":29488,"featured_media_search_card_image":30585,"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\/wp-json\/wp\/v2\/stories\/42044","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/unlocked.microsoft.com\/es\/wp-json\/wp\/v2\/stories"}],"about":[{"href":"https:\/\/unlocked.microsoft.com\/es\/wp-json\/wp\/v2\/types\/stories"}],"wp:attachment":[{"href":"https:\/\/unlocked.microsoft.com\/es\/wp-json\/wp\/v2\/media?parent=42044"}],"wp:term":[{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/unlocked.microsoft.com\/es\/wp-json\/wp\/v2\/tags?post=42044"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}