{"id":42038,"date":"2026-03-26T10:09:33","date_gmt":"2026-03-26T17:09:33","guid":{"rendered":"https:\/\/unlocked.microsoft.com\/?post_type=stories&#038;p=42038"},"modified":"2026-07-10T10:10:49","modified_gmt":"2026-07-10T17:10:49","slug":"quand-les-donnees-circulent-plus-vite-lespoir-aussi","status":"publish","type":"stories","link":"https:\/\/unlocked.microsoft.com\/fr-ca\/quand-les-donnees-circulent-plus-vite-lespoir-aussi\/","title":{"rendered":"Quand les donn\u00e9es circulent plus vite, l\u2019espoir aussi"},"content":{"rendered":"\n<div\n    id=\"block_8110b920ba30d0e14df313fdab58d51d\"\n    class=\"split-feature split-feature--inset-image split-feature--left 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                                    Quand les donn\u00e9es circulent plus vite, l\u2019espoir aussi                                <\/h1>\n                                <\/div>\n                <div class=\"split-feature__excerpt-wrapper\">\n            <div class=\"split-feature__excerpt\">Les personnes atteintes de SLA choisissent de partager leurs donn\u00e9es via Neuromine afin que les chercheurs puissent progresser plus rapidement, tous ensemble<\/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_6a8d70991b5fd\"\n    class=\"spacer spacer-6 spacer-mobile-2 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_6a8d7099207ec\" class=\"row row--space-between column__container mobile-column-gap-1 column--layout-40-60\">\n    \n<div id=\"block-column_6a8d70991da16\" class=\"column column-vertical-align--haut\">\n    \n<div\n    id=\"block_11b0adffdbb4444d225fc92d4cb49cb1\"\n    class=\"share-block \">\n    \n<section\n    class=\"social-share js-social-share social-share--left\"\n        aria-label=\"Share Quand les donn\u00e9es circulent plus vite, l\u2019espoir aussi on social media\"\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\" aria-hidden=\"true\"  role=\"img\" focusable=\"false\" viewBox=\"0 0 10 8\" fill=\"none\" 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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-6a8d70991cc01\">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_6a8d70991cd1e\"\n    class=\"spacer spacer-4 spacer-mobile-2 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_cf4c52cdebde32373d575102cd9acb03\"\n    class=\"publication-date \">\n    <p class=\"publication-date__text\">mars 26, 2026<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8d70991d354\"\n    class=\"spacer spacer-4 spacer-mobile-2 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8d70991d533\"\n    class=\"rich-text transition--in-up \">\n    <h4 class=\"--h4\">On estime \u00e0 450 000 le nombre de personnes atteintes de SLA dans le monde.<\/h4>\n<p class=\"--h5\">Il n\u2019existe aucun rem\u00e8de.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a8d7099206a8\" class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_6a8d70991df3b\"\n    class=\"rich-text transition--in-up \">\n    <p>Pour les personnes atteintes de SLA, chaque seconde compte. Apr\u00e8s le diagnostic, beaucoup n\u2019ont plus que 2 \u00e0 5 ans \u00e0 passer avec leurs amis et leurs proches. Les familles doivent s\u2019habituer \u00e0 un nouveau vocabulaire \u2014 sondes d\u2019alimentation, aides \u00e0 la mobilit\u00e9, perte de la voix \u2014 tandis qu\u2019une autre horloge, plus silencieuse, commence \u00e0 tourner dans les laboratoires de recherche. Les longs d\u00e9lais de la recherche ne correspondent souvent pas \u00e0 l\u2019urgence qui r\u00e8gne en clinique \u2014 et c\u2019est ce d\u00e9calage qu\u2019<a href=\"https:\/\/www.answerals.org\/\" target=\"_blank\" rel=\"noopener\">Answer ALS<\/a> s\u2019est donn\u00e9 pour mission de combler.<\/p>\n<p>Answer ALS est n\u00e9 d\u2019une id\u00e9e simple mais puissante : les personnes atteintes de SLA sont bien plus que de simples patients dans le syst\u00e8me. Elles peuvent contribuer activement au progr\u00e8s. Lorsque les personnes choisissent de partager leurs donn\u00e9es \u2013 en toute s\u00e9curit\u00e9, de mani\u00e8re responsable et pour le bien commun \u2013, cela peut ouvrir la voie \u00e0 un avenir tr\u00e8s diff\u00e9rent pour la recherche.<\/p>\n<p>Answer ALS rassemble des chercheurs, des personnes atteintes de SLA et des d\u00e9fenseurs de la cause dans un effort ouvert et collaboratif visant \u00e0 acc\u00e9l\u00e9rer la d\u00e9couverte de traitements et de rem\u00e8des. L\u2019objectif est de fournir un acc\u00e8s s\u00e9curis\u00e9 \u00e0 des donn\u00e9es cliniques et biologiques d\u00e9taill\u00e9es, ainsi qu\u2019aux \u00e9chantillons biologiques associ\u00e9s, afin que les scientifiques puissent identifier des sous-groupes biologiques, des biomarqueurs et des cibles th\u00e9rapeutiques. Mais historiquement, disposer de donn\u00e9es n\u2019\u00e9tait pas la m\u00eame chose que de les partager d\u2019une mani\u00e8re qui aidait r\u00e9ellement les chercheurs \u00e0 avancer plus vite.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8d7099213cb\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_8f27819e1e79397447b53596c162f579\" class=\"video-player\">\n    <div id=\"videoplayer-1\" class=\"video-player__wrapper js-video-player theme-overlay  has-overlay-image\" aria-label=\"Regarder \u00ab Chaque seconde compte \u00bb\">\n        <div\n            id=\"video-player-overlay-1c4c8c9a-1319-4744-8288-8f7d40f6a38a\"\n            class=\"video-player__overlay js-video-player-overlay\"\n            data-label-video-title=\"\u00ab Chaque seconde compte \u00bb\"\n            data-label-desktop=\"A man using assistive breathing equipment holds a young girl in a white shirt as they both look upward together 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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-6a8d70996a30b\">Audio Described<\/title><\/svg><\/a>\n            <\/div>\n    <\/div>\n\n\n\n\n<div\n    id=\"block_6a8d70996a517\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_6a8d70996afe5\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a8d70996aa89\" class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_6a8d70996a993\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a8d70996ae91\" class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_6a8d70996ac37\"\n    class=\"rich-text transition--in-up \">\n    <h3 class=\"--h4\">Le d\u00e9fi qui a chang\u00e9 la donne<\/h3>\n<p>Answer ALS disposait de donn\u00e9es essentielles : une vue multi-omique exhaustive de la SLA chez l\u2019ensemble des participants, comprenant notamment des donn\u00e9es issues du s\u00e9quen\u00e7age du g\u00e9nome entier, des donn\u00e9es cliniques longitudinales d\u00e9taill\u00e9es et des mod\u00e8les neuronaux bas\u00e9s sur des cellules souches d\u00e9riv\u00e9es de patients. Pourtant, la premi\u00e8re tentative de partage de ces donn\u00e9es \u2014 par l\u2019interm\u00e9diaire d\u2019une institution universitaire \u2014 n\u2019avait pas \u00e9t\u00e9 con\u00e7ue pour \u00eatre d\u00e9ploy\u00e9e \u00e0 grande \u00e9chelle.<\/p>\n<p>Dans la pratique, elle fonctionnait davantage comme un simple r\u00e9f\u00e9rentiel de fichiers, ou comme un lieu o\u00f9 tout \u00e9tait stock\u00e9, mais cela sans offrir une navigation ais\u00e9e. Si les chercheurs pouvaient techniquement s\u00e9lectionner des cohortes sp\u00e9cifiques, cela n\u00e9cessitait des connaissances en ligne de commande et un haut niveau d\u2019expertise informatique. Pour de nombreux chercheurs fondamentaux et cliniciens, m\u00eame des questions simples, telles que \u00ab Puis-je isoler les donn\u00e9es concernant les femmes atteintes de SLA? \u00bb, \u00e9taient difficiles \u00e0 r\u00e9soudre sans un soutien technique important. Cela limitait la capacit\u00e9 de la plateforme \u00e0 permettre une exploration efficace en libre-service.<\/p>\n<p>Pire encore, le flux de travail restreignait discr\u00e8tement le cercle des participants. Si l\u2019on n\u2019\u00e9tait pas \u00e0 l\u2019aise avec la ligne de commande ou si l\u2019on ne disposait pas de solides comp\u00e9tences en informatique et en stockage, cet ensemble de donn\u00e9es \u00ab ouvert \u00bb n\u2019\u00e9tait pas vraiment accessible. Et comme la plateforme n\u2019avait pas \u00e9t\u00e9 con\u00e7ue pour \u00eatre une ressource publique s\u00e9curis\u00e9e \u2014 le c\u0153ur m\u00eame de la mission d\u2019Answer ALS \u2014, il \u00e9tait difficile de mettre en place un partage mondial \u00e0 grande \u00e9chelle de mani\u00e8re responsable.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8d70996b255\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_6a8d709977ba0\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a8d709977405\" class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_233fdb61382ec14f826ee4e2fa09c885\"\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                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class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_6a8d7099775f9\"\n    class=\"rich-text transition--in-up \">\n    <h4 class=\"--h4\">Agir plus vite, investir plus massivement, collaborer sans rel\u00e2che<\/h4>\n<p>Pour Steve Gleason, c\u2019est un v\u00e9ritable credo.<\/p>\n<p>L\u2019ancien d\u00e9fenseur des New Orleans Saints a contribu\u00e9 \u00e0 red\u00e9finir ce qui est possible pour les personnes atteintes de SLA. Diagnostiqu\u00e9 en 2011, Steve a transform\u00e9 son exp\u00e9rience personnelle en un moteur d\u2019action, militant pour un meilleur accompagnement, des technologies plus performantes et des avanc\u00e9es plus rapides dans la recherche.<\/p>\n<blockquote>\n<h6 class=\"--h6\">\u00ab Je dis que j\u2019ai re\u00e7u un diagnostic de SLA pour que des millions de personnes \u00e0 l\u2019avenir n\u2019aient pas \u00e0 subir ce m\u00eame diagnostic \u00bb, d\u00e9clare Steve Gleason, fondateur et membre du conseil d\u2019administration d\u2019Answer ALS.<\/h6>\n<\/blockquote>\n<p>De nombreux fans de la NFL se souviennent de lui pour un moment embl\u00e9matique : un punt bloqu\u00e9 lors d\u2019un match en 2006. En 2012, une statue en bronze install\u00e9e \u00e0 l\u2019ext\u00e9rieur du Superdome l\u2019a immortalis\u00e9 en plein blocage. Aujourd\u2019hui, il contribue \u00e0 surmonter les obstacles qui freinent l\u2019acc\u00e8s aux soins et les progr\u00e8s pour les autres personnes atteintes de SLA.<\/p>\n<p>En tant que d\u00e9fenseur de longue date de la cause de la SLA, Steve a toujours insist\u00e9 sur le fait que les personnes atteintes de SLA ne devraient pas avoir \u00e0 attendre un rem\u00e8de pour continuer \u00e0 mener une vie \u00e9panouissante. Gr\u00e2ce \u00e0 une autre association \u00e0 but non lucratif, <a href=\"https:\/\/teamgleason.org\/\" target=\"_blank\" rel=\"noopener\">Team Gleason<\/a>, il a aid\u00e9 des milliers de personnes atteintes de SLA et d\u2019autres maladies neuromusculaires \u00e0 acc\u00e9der \u00e0 des outils et des services pratiques qui pr\u00e9servent leur autonomie \u00e0 l\u2019instant m\u00eame, notamment en mati\u00e8re de communication et de mobilit\u00e9. Ax\u00e9e sur la mise en relation des personnes avec des technologies et des \u00e9quipements d\u2019assistance, cette association sensibilise le public et acc\u00e9l\u00e8re la dynamique visant \u00e0 mettre fin \u00e0 la SLA.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8d709977e09\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_67718afd05e358c27beb5b3c7255e891\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__centre pullquote__h4\">\n        <blockquote class=\"quote quote__h4 quote--show-marks\">La technologie me rend ce que la SLA m\u2019a pris : ma voix, ma mobilit\u00e9, ainsi que ma capacit\u00e9 \u00e0 communiquer et \u00e0 cr\u00e9er.<\/blockquote>\n                    <div class=\"quote__attribution\">\n                                    <div class=\"attribution-name\">Steve Gleason<\/div>\n                                                    <div class=\"attribution-description\">Fondateur et membre du conseil d\u2019administration d\u2019Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8d70997950c\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_6a8d709979d9c\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a8d7099798cb\" class=\"column column--empty\">\n    \n\n<div\n    id=\"block_6a8d7099797d9\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a8d709979c5f\" class=\"column\">\n    \n\n<div\n    id=\"block_6a8d709979a9d\"\n    class=\"rich-text transition--in-up \">\n    <h3 class=\"--h4\">Con\u00e7u pour les chercheurs et optimis\u00e9 pour la rapidit\u00e9<\/h3>\n<p>Answer ALS a traduit l\u2019urgence exprim\u00e9e par Steve Gleason en Neuromine, une plateforme de recherche collaborative con\u00e7ue pour faciliter la recherche, le filtrage et l\u2019utilisation des donn\u00e9es relatives \u00e0 la SLA. Cela offre aux chercheurs un meilleur acc\u00e8s aux donn\u00e9es sans qu\u2019ils aient \u00e0 se battre contre les obstacles li\u00e9s \u00e0 l\u2019infrastructure avant de pouvoir lutter contre la maladie.<\/p>\n<p>Con\u00e7u dans le respect de la vie priv\u00e9e, de la s\u00e9curit\u00e9 et des personnes dont les donn\u00e9es alimentent ces travaux, Neuromine fonctionne sur Azure. Gr\u00e2ce \u00e0 cette base, les chercheurs peuvent localiser des segments pertinents de l\u2019ensemble de donn\u00e9es par le biais de la recherche et du filtrage, extraire des cohortes cibl\u00e9es et int\u00e9grer les donn\u00e9es dans leur propre environnement de travail. Des liens clairs vers les \u00e9chantillons biologiques et les ressources de lign\u00e9es cellulaires aident les \u00e9quipes \u00e0 passer de la d\u00e9couverte \u00e0 la validation, au lieu de rester bloqu\u00e9es \u00e0 l\u2019\u00e9tape \u00ab r\u00e9sultat int\u00e9ressant, prochaine \u00e9tape incertaine \u00bb. La gouvernance et l\u2019acc\u00e8s sont structur\u00e9s de mani\u00e8re \u00e0 garantir une large accessibilit\u00e9 du portail, sans ralentir la recherche l\u00e9gitime.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8d709979fe4\"\n    class=\"spacer spacer-9 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_6a8d70999048c\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a8d70997a813\" class=\"column column-vertical-align--haut\">\n    \n\n\n<div\n    id=\"block_6a8d70997a2ae\"\n    class=\"spacer spacer-11 spacer-mobile-0 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8d70997a476\"\n    class=\"rich-text transition--in-up \">\n    <p class=\"--h4\">De 72 \u00e0 deux semaines<\/p>\n<p class=\"unformatted\">Autrefois, il fallait compter entre 12 et 18 mois pour disposer d\u2019un ensemble de donn\u00e9es exploitables. Gr\u00e2ce \u00e0 Neuromine, les chercheurs peuvent passer de l\u2019hypoth\u00e8se \u00e0 l\u2019acc\u00e8s aux donn\u00e9es \u2014 et aux \u00e9chantillons biologiques correspondants \u2014 en environ deux semaines.<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8d70997a678\"\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_6a8d709990357\" class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_8ceca0718eba2a2f587d178fa30fe90c\"\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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7.08483 8.3271 6.88956 8.13184L4.06736 5.30964L4.06083 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\">\u2019Neurones vivants atteints de SLA<\/div>\n        <\/div>\n<\/div>\n<\/div>\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8d709990719\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_6a8d7099913ca\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a8d709990af2\" class=\"column column--empty\">\n    \n\n<div\n    id=\"block_6a8d709990a07\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a8d7099912e8\" class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_6a8d709990cad\"\n    class=\"rich-text transition--in-up \">\n    <p>Neuromine a permis la mise en \u0153uvre de plus de 520 projets de recherche, allant des classes de secondaire jusqu\u2019aux principaux instituts de recherche. Les donn\u00e9es provenant de plus de 1 100 participants \u00e0 l\u2019initiative \u00ab Answer ALS \u00bb sont d\u00e9sormais harmonis\u00e9es et disponibles dans Neuromine, aux c\u00f4t\u00e9s de celles de l\u2019ALS Research Collaborative (ARC) de l\u2019ALS Therapy Development Institute, ce qui permet aux chercheurs d\u2019\u00e9tudier plus de 2 500 profils de patients atteints de SLA en un seul et m\u00eame endroit. Answer ALS estime que ce mod\u00e8le pourrait acc\u00e9l\u00e9rer les d\u00e9lais de recherche de pr\u00e8s de 65 % au cours des deux prochaines ann\u00e9es. Pour la premi\u00e8re fois, les chercheurs peuvent analyser la SLA \u00e0 une \u00e9chelle et avec une profondeur qui r\u00e9v\u00e8lent des sch\u00e9mas qu\u2019aucun \u00eatre humain ne pourrait d\u00e9tecter seul.<\/p>\n<p>Les approches d\u2019apprentissage automatique mettent en \u00e9vidence des relations g\u00e9n\u00e9tiques auparavant invisibles, notamment un ensemble prometteur de g\u00e8nes appel\u00e9s nucl\u00e9oporines, qui r\u00e9gulent le trafic entrant et sortant du noyau cellulaire. Les premiers indices sugg\u00e8rent que des combinaisons de mutations dans ces g\u00e8nes pourraient aider \u00e0 expliquer pourquoi certaines personnes d\u00e9clinent rapidement tandis que d\u2019autres vivent pendant de nombreuses ann\u00e9es. Les \u00e9quipes peuvent d\u00e9sormais valider ces observations en transformant les cellules sanguines des patients en neurones, puis en utilisant des microscopes robotis\u00e9s et des biocapteurs pour observer en temps r\u00e9el le d\u00e9roulement de la SLA \u00e0 l\u2019int\u00e9rieur de la cellule.<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8d709990f21\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8d709991187\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n<div id=\"block_6a8d7099b23f0\" class=\"row row--space-between column__container mobile-column-gap-6 column--layout-33-33-33\">\n    \n<div id=\"block-column_6a8d70999c636\" class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_080aa7779a077e9dd2feef4404f3b704\"\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=\"Femme d\u2019\u00e2ge m\u00fbr aux cheveux blonds et portant des lunettes \u00e0 monture noire, v\u00eatue d\u2019une veste beige, le regard pensif tourn\u00e9 vers le c\u00f4t\u00e9.\"\n            loading=\"lazy\"\n            decoding=\"async\" \/>\n            <\/picture>\n            <\/div>\n<\/div>\n\n\n\n<div\n    id=\"block_6a8d70999c06a\"\n    class=\"spacer spacer-2 spacer-mobile-2 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_85c3eb7a15cc15e46db91c36eb55ec09\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__gauche pullquote__h5\">\n        <blockquote class=\"quote quote__h5 quote--show-marks\">Tous ceux qui ont particip\u00e9 savaient qu\u2019ils ne seraient peut-\u00eatre plus l\u00e0 pour voir les r\u00e9sultats. Leur d\u00e9vouement \u00e9tait tout simplement extraordinaire.<\/blockquote>\n                    <div class=\"quote__attribution\">\n                                    <div class=\"attribution-name\">Clare Durrett<\/div>\n                                                    <div class=\"attribution-description\">Directeur g\u00e9n\u00e9ral, Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a8d7099a75a1\" class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_fd95688bcc4ee02af0d30a537d5d094d\"\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=\"Femme d\u2019\u00e2ge m\u00fbr, blonde et portant des lunettes, v\u00eatue d\u2019un t-shirt noir, dans un bureau moderne \u00e9quip\u00e9 d\u2019ordinateurs et d\u00e9cor\u00e9 d\u2019\u0153uvres d\u2019art encadr\u00e9es.\"\n            loading=\"lazy\"\n            decoding=\"async\" \/>\n            <\/picture>\n            <\/div>\n<\/div>\n\n\n\n<div\n    id=\"block_6a8d7099a6fcb\"\n    class=\"spacer spacer-2 spacer-mobile-2 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_2d81791f7f15995ab510e1226c2aaee3\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__gauche pullquote__h5\">\n        <blockquote class=\"quote quote__h5 quote--show-marks\">Comme Neuromine permet de diffuser des donn\u00e9es rapidement et gratuitement \u00e0 l\u2019\u00e9chelle mondiale, cela r\u00e9duira la dur\u00e9e de la phase de d\u00e9couverte de plusieurs mois, voire de plusieurs ann\u00e9es.<\/blockquote>\n                    <div class=\"quote__attribution\">\n                                    <div class=\"attribution-name\">Terri Thompson, PhD<\/div>\n                                                    <div class=\"attribution-description\">Directeur de la gestion des donn\u00e9es et responsable du programme Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a8d7099b22a0\" class=\"column\">\n    \n\n<div\n    id=\"block_e84877a9c2b554a93423e739b1492836\"\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=\"Une femme aux cheveux bruns ondul\u00e9s, v\u00eatue d\u2019un chemisier blanc \u00e0 motifs, se tient debout dans un laboratoire scientifique, avec du mat\u00e9riel rang\u00e9 sur des \u00e9tag\u00e8res derri\u00e8re elle.\"\n            loading=\"lazy\"\n            decoding=\"async\" \/>\n            <\/picture>\n            <\/div>\n<\/div>\n\n\n\n<div\n    id=\"block_6a8d7099b1cf2\"\n    class=\"spacer spacer-2 spacer-mobile-2 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_9bf8416fca2a3bd8754e49633f46dde1\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__gauche pullquote__h5\">\n        <blockquote class=\"quote quote__h5 quote--show-marks\">Je suis vraiment enthousiasm\u00e9e par certains des r\u00e9sultats r\u00e9cents qui nous permettent de distinguer les cellules provenant de patients atteints de SLA gr\u00e2ce aux donn\u00e9es d\u2019Answer ALS.<\/blockquote>\n                    <div class=\"quote__attribution\">\n                                    <div class=\"attribution-name\">Julia Kaye, PhD<\/div>\n                                                    <div class=\"attribution-description\">Chercheuse, 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_6a8d7099b2656\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_6a8d7099b3c38\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a8d7099b2a02\" class=\"column column--empty\">\n    \n\n<div\n    id=\"block_6a8d7099b291f\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a8d7099b3b39\" class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_6a8d7099b2bbb\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n\n<div\n    id=\"block_6a8d7099b2d77\"\n    class=\"rich-text transition--in-up \">\n    <h3 class=\"--h4\">Les donn\u00e9es ouvertes : une v\u00e9ritable dynamique<\/h3>\n<p>Un nouveau mod\u00e8le de recherche sur les maladies rares est en train de voir le jour. Ce mod\u00e8le pr\u00f4ne la mise en commun des donn\u00e9es, le calcul intensif et l\u2019innovation participative, qui, combin\u00e9s, permettent de raccourcir le chemin menant de l\u2019hypoth\u00e8se \u00e0 la d\u00e9couverte. Pour les personnes atteintes de SLA \u2014 qui n\u2019ont souvent pas le temps d\u2019attendre \u2014, cette acc\u00e9l\u00e9ration offre la perspective d\u2019un chemin plus clair vers un rem\u00e8de.<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8d7099b2f93\"\n    class=\"spacer spacer-4 spacer-mobile-2 spacer--tous-only\">\n<\/div>\n\n\n\n<nav\n\tclass=\"story-tags ticss-db52dfad\"\n\taria-labelledby=\"block_58297cd6c8a246d34617ce6774b2bfcd-topics-label\"\n\tid=\"block_58297cd6c8a246d34617ce6774b2bfcd\">\n\t<div class=\"story-tags__inner\">\n\t\t<span class=\"story-tags__label\" id=\"block_58297cd6c8a246d34617ce6774b2bfcd-topics-label\">Topics:<\/span>\n\t\t\t\t\t\t<a class=\"story-tags__link\" href=\"https:\/\/unlocked.microsoft.com\/fr-ca\/tag\/donnees\/\">Donn\u00e9es<\/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\/fr-ca\/tag\/ia\/\">IA<\/a>\n\t\t\t\t\t<a class=\"story-tags__link\" href=\"https:\/\/unlocked.microsoft.com\/fr-ca\/tag\/sante\/\">Sant\u00e9<\/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_6a8d7099b3e9f\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_a5c70ae05e8112e401fd06789bacfb7b\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__centre pullquote__h4\">\n        <blockquote class=\"quote quote__h4 quote--show-marks\"><span data-teams=\"true\">Elle transforme les histoires individuelles en force collective. Les donn\u00e9es ouvertes acc\u00e9l\u00e8rent tout.<\/span><\/blockquote>\n                    <div class=\"quote__attribution\">\n                                    <div class=\"attribution-name\">Steve Gleason<\/div>\n                                                    <div class=\"attribution-description\">Fondateur et membre du conseil d\u2019administration d\u2019Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8d7099b45b4\"\n    class=\"spacer spacer-9 spacer-mobile-6 spacer--tous-only\">\n<\/div>\n\n","protected":false},"excerpt":{"rendered":"<p>Les personnes atteintes de SLA choisissent de partager leurs donn\u00e9es via Neuromine afin que les chercheurs puissent progresser plus rapidement, tous ensemble<\/p>\n","protected":false},"parent":0,"menu_order":0,"template":"","meta":{"_acf_changed":true},"tags":[257,392,412],"class_list":["post-42038","stories","type-stories","status-publish","hentry","tag-donnees","tag-ia","tag-sante","collections-thriving-communities","entry","page-content"],"acf":{"featured_media_featured_scrim_color":"#000000","featured_media_card_ratio":"1-1","featured_media_card_image":30518,"featured_media_card_video":"","featured_media_card_video_button_desc":"","featured_media_featured_image":30545,"featured_media_featured_video":"","featured_media_featured_video_button_desc":"","featured_media_featured_headline":"","featured_media_featured_excerpt":"","featured_media_search_image":29475,"featured_media_search_card_image":30572,"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\/fr-ca\/wp-json\/wp\/v2\/stories\/42038","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/unlocked.microsoft.com\/fr-ca\/wp-json\/wp\/v2\/stories"}],"about":[{"href":"https:\/\/unlocked.microsoft.com\/fr-ca\/wp-json\/wp\/v2\/types\/stories"}],"wp:attachment":[{"href":"https:\/\/unlocked.microsoft.com\/fr-ca\/wp-json\/wp\/v2\/media?parent=42038"}],"wp:term":[{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/unlocked.microsoft.com\/fr-ca\/wp-json\/wp\/v2\/tags?post=42038"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}