{"id":42030,"date":"2026-03-26T10:09:33","date_gmt":"2026-03-26T17:09:33","guid":{"rendered":"https:\/\/unlocked.microsoft.com\/?post_type=stories&#038;p=42030"},"modified":"2026-07-10T10:15:02","modified_gmt":"2026-07-10T17:15:02","slug":"lorsque-les-donnees-circulent-plus-vite-lespoir-progresse-lui-aussi","status":"publish","type":"stories","link":"https:\/\/unlocked.microsoft.com\/fr\/lorsque-les-donnees-circulent-plus-vite-lespoir-progresse-lui-aussi\/","title":{"rendered":"Lorsque les donn\u00e9es circulent plus vite, l\u2019espoir progresse lui aussi"},"content":{"rendered":"\n<div\n    id=\"block_23a23f70ae38be5d601dde94b9ab3ab9\"\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                                    Lorsque les donn\u00e9es circulent plus vite, l\u2019espoir progresse lui 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 de permettre aux chercheurs d\u2019avancer plus rapidement, 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, 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   <\/picture>\n            <\/div>\n<\/div>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a65ffc0110e1\"\n    class=\"spacer spacer-6 spacer-mobile-2 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_6a65ffc017bd5\" class=\"row row--space-between column__container mobile-column-gap-1 column--layout-40-60\">\n    \n<div id=\"block-column_6a65ffc013ab6\" class=\"column column-vertical-align--haut\">\n    \n<div\n    id=\"block_fd0f20e41b56772317cc3011cce315f2\"\n    class=\"share-block \">\n    \n<section\n    class=\"social-share js-social-share social-share--left\"\n        aria-label=\"Share Lorsque les donn\u00e9es circulent plus vite, l\u2019espoir progresse lui 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\" 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<svg class=\"svg-icon\" width=\"24\" height=\"24\" aria-hidden=\"true\" aria-labelledby=\"icon-6a65ffc01285c\" 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-6a65ffc01285c\">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_6a65ffc01298f\"\n    class=\"spacer spacer-4 spacer-mobile-2 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_d36c204563fc412e515623c8ff8a165c\"\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_6a65ffc01301c\"\n    class=\"spacer spacer-4 spacer-mobile-2 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a65ffc01322c\"\n    class=\"rich-text transition--in-up \">\n    <h4 class=\"--h4\">Environ 450\u00a0000\u00a0personnes dans le monde vivent avec la SLA.<\/h4>\n<p class=\"--h5\">Il n\u2019existe aucun traitement curatif.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a65ffc017a5e\" class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_6a65ffc013fd1\"\n    class=\"rich-text transition--in-up \">\n    <p>Pour les personnes atteintes de scl\u00e9rose lat\u00e9rale amyotrophique\u00a0(SLA), chaque seconde compte. Apr\u00e8s le diagnostic, beaucoup ne disposent que de deux \u00e0 cinq ann\u00e9es aupr\u00e8s de leurs proches. Les familles apprennent un nouveau vocabulaire \u2014 sondes d\u2019alimentation, dispositifs de 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 pas toujours \u00e0 l\u2019urgence ressentie en clinique \u2014 et c\u2019est ce d\u00e9calage qu\u2019<a href=\"https:\/\/www.answerals.org\/\" target=\"_blank\" rel=\"noopener\">Answer\u00a0ALS<\/a> a entrepris de r\u00e9duire.<\/p>\n<p>Answer\u00a0ALS est n\u00e9 d\u2019une id\u00e9e simple mais puissante\u00a0: les personnes atteintes de SLA sont bien plus que des patients au sein d\u2019un syst\u00e8me. Elles peuvent contribuer activement au progr\u00e8s. Lorsqu\u2019elles choisissent de partager leurs donn\u00e9es de mani\u00e8re s\u00e9curis\u00e9e, responsable et dans l\u2019int\u00e9r\u00eat collectif, elles ouvrent la voie \u00e0 un avenir tr\u00e8s diff\u00e9rent pour la recherche.<\/p>\n<p>Answer\u00a0ALS r\u00e9unit chercheurs, personnes atteintes de SLA et d\u00e9fenseurs de la cause dans une d\u00e9marche ouverte et collaborative visant \u00e0 acc\u00e9l\u00e9rer la d\u00e9couverte de traitements et, \u00e0 terme, d\u2019un rem\u00e8de. 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. Historiquement, toutefois, disposer de donn\u00e9es ne signifiait pas n\u00e9cessairement les partager de mani\u00e8re \u00e0 permettre aux chercheurs d\u2019avancer plus vite.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a65ffc0187f0\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_84cc5f2957a94e6c4dabca67676440b0\" class=\"video-player\">\n    <div id=\"videoplayer-1\" class=\"video-player__wrapper js-video-player theme-overlay  has-overlay-image\" aria-label=\"Regarder \u00ab\u00a0Chaque seconde compte\u00a0\u00bb\">\n        <div\n            id=\"video-player-overlay-0981519d-ce42-41f6-ac28-cd8f6813bf23\"\n            class=\"video-player__overlay js-video-player-overlay\"\n            data-label-video-title=\"\u00ab\u00a0Chaque seconde compte\u00a0\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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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-6a65ffc06d545\">Audio Described<\/title><\/svg><\/a>\n            <\/div>\n    <\/div>\n\n\n\n\n<div\n    id=\"block_6a65ffc06d77f\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_6a65ffc06e110\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a65ffc06dbc8\" class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_6a65ffc06dad3\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a65ffc06dfe4\" class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_6a65ffc06dd8d\"\n    class=\"rich-text transition--in-up \">\n    <h3 class=\"--h4\">Le d\u00e9fi qui a chang\u00e9 le rythme de la recherche<\/h3>\n<p>Answer\u00a0ALS disposait de donn\u00e9es essentielles\u00a0: une vue multiomique \u00e0 grande \u00e9chelle de la SLA couvrant l\u2019ensemble des participants, incluant notamment le s\u00e9quen\u00e7age complet du g\u00e9nome, de riches donn\u00e9es cliniques longitudinales et des mod\u00e8les neuronaux d\u00e9riv\u00e9s de cellules souches provenant des patients. Pourtant, la premi\u00e8re tentative de partage de ces donn\u00e9es, via un \u00e9tablissement universitaire, n\u2019avait jamais \u00e9t\u00e9 con\u00e7ue pour \u00e9voluer \u00e0 grande \u00e9chelle.<\/p>\n<p>Dans les faits, la plateforme fonctionnait davantage comme un simple d\u00e9p\u00f4t de fichiers, un endroit o\u00f9 tout \u00e9tait stock\u00e9 sans \u00eatre v\u00e9ritablement facile \u00e0 explorer. Les chercheurs pouvaient certes s\u00e9lectionner des cohortes sp\u00e9cifiques, mais cela exigeait la ma\u00eetrise de lignes de commande ainsi qu\u2019un niveau \u00e9lev\u00e9 d\u2019expertise informatique. Pour de nombreux chercheurs en sciences fondamentales et cliniciens, m\u00eame des questions simples comme\u00a0: \u00ab\u00a0Puis-je isoler les donn\u00e9es concernant les femmes atteintes de SLA\u00a0?\u00a0\u00bb \u00e9taient difficiles \u00e0 traiter sans assistance technique importante. Cette situation limitait la capacit\u00e9 de la plateforme \u00e0 offrir une d\u00e9couverte autonome et efficace des donn\u00e9es.<\/p>\n<p>Pire encore, ce fonctionnement r\u00e9duisait discr\u00e8tement le nombre de personnes capables de participer. Sans aisance avec les interfaces en ligne de commande ou sans solides comp\u00e9tences en calcul et en stockage de donn\u00e9es, cet ensemble de donn\u00e9es pr\u00e9tendument \u00ab\u00a0ouvert\u00a0\u00bb ne l\u2019\u00e9tait pas vraiment. Et comme la plateforme n\u2019avait pas \u00e9t\u00e9 con\u00e7ue pour devenir une ressource publique s\u00e9curis\u00e9e, pourtant au c\u0153ur m\u00eame de la mission de Answer\u00a0ALS, il \u00e9tait difficile de permettre 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_6a65ffc06e374\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_6a65ffc07b40e\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a65ffc07ac25\" class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_8ecb08fdb2b4867c5b49f13585b380fb\"\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  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class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_6a65ffc07ae19\"\n    class=\"rich-text transition--in-up \">\n    <h4 class=\"--h4\">Avancer plus vite, financer davantage, collaborer sans rel\u00e2che<\/h4>\n<p>Pour Steve Gleason, il s\u2019agit d\u2019une ligne directrice.<\/p>\n<p>Ancien safety des New Orleans Saints, Steve Gleason a contribu\u00e9 \u00e0 red\u00e9finir ce qu\u2019il est possible d\u2019accomplir lorsqu\u2019on vit avec la SLA. Diagnostiqu\u00e9 en\u00a02011, il a transform\u00e9 son exp\u00e9rience personnelle en moteur d\u2019action, plaidant pour un meilleur accompagnement, de meilleures technologies et une acc\u00e9l\u00e9ration des progr\u00e8s de la recherche.<\/p>\n<blockquote>\n<h6 class=\"--h6\">\u00ab\u00a0J\u2019aime dire que j\u2019ai re\u00e7u un diagnostic de SLA afin que, dans l\u2019avenir, des millions de personnes n\u2019aient jamais \u00e0 recevoir ce diagnostic\u00a0\u00bb, d\u00e9clare Steve Gleason, fondateur et membre du conseil d\u2019administration de Answer\u00a0ALS.<\/h6>\n<\/blockquote>\n<p>De nombreux amateurs de NFL se souviennent de lui pour un moment devenu l\u00e9gendaire\u00a0: un punt contr\u00e9 lors d\u2019un match en 2006. En\u00a02012, une statue de bronze \u00e9rig\u00e9e devant le Superdome l\u2019a immortalis\u00e9 en plein geste. Aujourd\u2019hui, il s\u2019efforce d\u2019\u00e9liminer les obstacles qui ralentissent l\u2019acc\u00e8s aux ressources et les avanc\u00e9es pour les autres personnes atteintes de SLA.<\/p>\n<p>Militant de longue date pour la cause de la SLA, Steve d\u00e9fend l\u2019id\u00e9e que les personnes atteintes de cette maladie ne devraient pas attendre un rem\u00e8de pour continuer \u00e0 mener une vie riche de sens. Gr\u00e2ce \u00e0 une autre organisation \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 services concrets favorisant leur autonomie, notamment en mati\u00e8re de communication et de mobilit\u00e9. Centr\u00e9e sur l\u2019acc\u00e8s aux technologies d\u2019assistance et aux \u00e9quipements adapt\u00e9s, l\u2019organisation sensibilise le public tout en acc\u00e9l\u00e9rant les efforts 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_6a65ffc07b681\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_9a3b5d26ad406524e290d68581313227\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__centre pullquote__h4\">\n        <blockquote class=\"quote quote__h4 quote--show-marks\">La technologie redonne ce que la SLA enl\u00e8ve\u00a0: ma voix, ma mobilit\u00e9 et 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, Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a65ffc07ce18\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_6a65ffc07d6d1\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a65ffc07d201\" class=\"column column--empty\">\n    \n\n<div\n    id=\"block_6a65ffc07d117\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a65ffc07d581\" class=\"column\">\n    \n\n<div\n    id=\"block_6a65ffc07d3bb\"\n    class=\"rich-text transition--in-up \">\n    <h3 class=\"--h4\">Con\u00e7u pour les chercheurs et pens\u00e9 pour la rapidit\u00e9<\/h3>\n<p>Answer\u00a0ALS a transform\u00e9 le sentiment d\u2019urgence port\u00e9 par Steve Gleason en Neuromine, une plateforme de recherche collaborative con\u00e7ue pour faciliter la d\u00e9couverte, le filtrage et l\u2019exploitation des donn\u00e9es sur la SLA. Les chercheurs peuvent ainsi se concentrer sur la maladie plut\u00f4t que sur les contraintes techniques.<\/p>\n<p>Con\u00e7u autour de la confidentialit\u00e9, de la s\u00e9curit\u00e9 et du respect des personnes dont les donn\u00e9es alimentent la recherche, Neuromine fonctionne sur Azure. Gr\u00e2ce \u00e0 cette base technologique, les chercheurs peuvent localiser les segments de donn\u00e9es pertinents via des fonctions de recherche et de filtrage, constituer des cohortes cibl\u00e9es et int\u00e9grer les donn\u00e9es dans leur propre environnement de travail. Les liens clairs avec les \u00e9chantillons biologiques et les lign\u00e9es cellulaires permettent aux \u00e9quipes de passer plus rapidement de la d\u00e9couverte \u00e0 la validation, au lieu de rester bloqu\u00e9es au stade du \u00ab\u00a0r\u00e9sultat int\u00e9ressant, mais sans suite \u00e9vidente\u00a0\u00bb. Les m\u00e9canismes de gouvernance et d\u2019acc\u00e8s ont \u00e9t\u00e9 con\u00e7us pour rendre le portail largement utilisable sans ralentir les recherches l\u00e9gitimes.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a65ffc07d91b\"\n    class=\"spacer spacer-9 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_6a65ffc0945de\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a65ffc07e16b\" class=\"column column-vertical-align--haut\">\n    \n\n\n<div\n    id=\"block_6a65ffc07dbe2\"\n    class=\"spacer spacer-11 spacer-mobile-0 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a65ffc07ddaa\"\n    class=\"rich-text transition--in-up \">\n    <p class=\"--h4\">De 72\u00a0semaines \u00e0 deux semaines<\/p>\n<p class=\"unformatted\">Autrefois, l\u2019obtention d\u2019un jeu de donn\u00e9es exploitable pouvait prendre entre 12 et 18\u00a0mois. Avec Neuromine, les chercheurs peuvent passer d\u2019une hypoth\u00e8se \u00e0 l\u2019acc\u00e8s aux donn\u00e9es, ainsi qu\u2019aux \u00e9chantillons biologiques correspondants, en environ deux semaines.<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a65ffc07dfc9\"\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_6a65ffc0944c9\" class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_06d9bb155e65b65278dd5a6249f5ada8\"\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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8.13184C7.40141 8.3271 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\">Neurones 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_6a65ffc0948cd\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_6a65ffc09556e\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a65ffc094cbc\" class=\"column column--empty\">\n    \n\n<div\n    id=\"block_6a65ffc094bcb\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a65ffc095483\" class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_6a65ffc094e8d\"\n    class=\"rich-text transition--in-up \">\n    <p>Neuromine a d\u00e9j\u00e0 permis la r\u00e9alisation de plus de 520\u00a0projets de recherche, allant de salles de classe de lyc\u00e9es \u00e0 de grandes institutions scientifiques. Les donn\u00e9es de plus de 1\u00a0100\u00a0participants de Answer\u00a0ALS sont d\u00e9sormais harmonis\u00e9es et accessibles dans Neuromine aux c\u00f4t\u00e9s de celles de l\u2019ALS Therapy Development Institute et de son ALS Research Collaborative\u00a0(ARC), permettant aux chercheurs d\u2019\u00e9tudier plus de 2\u00a0500\u00a0profils de patients atteints de SLA au sein d\u2019une m\u00eame plateforme. Answer\u00a0ALS estime que ce mod\u00e8le pourrait acc\u00e9l\u00e9rer les d\u00e9lais de recherche de pr\u00e8s de 65\u00a0% au cours des prochaines ann\u00e9es. Pour la premi\u00e8re fois, les chercheurs peuvent analyser la SLA \u00e0 une \u00e9chelle et avec une profondeur suffisantes pour r\u00e9v\u00e9ler des sch\u00e9mas qu\u2019aucun \u00eatre humain ne pourrait d\u00e9tecter seul.<\/p>\n<p>Les approches de machine learning mettent d\u00e9j\u00e0 en \u00e9vidence des relations g\u00e9n\u00e9tiques auparavant invisibles, notamment autour d\u2019un groupe prometteur de g\u00e8nes appel\u00e9s nucl\u00e9oporines, qui r\u00e9gulent les \u00e9changes entre le noyau cellulaire et le reste de la cellule. Les premiers r\u00e9sultats sugg\u00e8rent que certaines combinaisons de mutations de ces g\u00e8nes pourraient expliquer pourquoi certaines personnes connaissent une d\u00e9gradation rapide tandis que d\u2019autres vivent pendant de nombreuses ann\u00e9es. Les \u00e9quipes peuvent d\u00e9sormais valider ces d\u00e9couvertes en transformant des cellules sanguines de patients en neurones, puis en observant l\u2019\u00e9volution de la SLA \u00e0 l\u2019int\u00e9rieur des cellules en temps r\u00e9el gr\u00e2ce \u00e0 des microscopes robotis\u00e9s et \u00e0 des biocapteurs.<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a65ffc095134\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a65ffc095319\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n<div id=\"block_6a65ffc0b8974\" class=\"row row--space-between column__container mobile-column-gap-6 column--layout-33-33-33\">\n    \n<div id=\"block-column_6a65ffc0a107e\" class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_9c9f697d6ef5505f891b5a1df80ad1cd\"\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=\"Une femme d\u2019\u00e2ge moyen aux cheveux blonds portant des lunettes \u00e0 monture noire et une veste beige regarde pensivement sur le c\u00f4t\u00e9.\"\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_6a65ffc0a09fa\"\n    class=\"spacer spacer-2 spacer-mobile-2 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_e73286d92ec57a027feaf8d3caeb8ba1\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__gauche pullquote__h5\">\n        <blockquote class=\"quote quote__h5 quote--show-marks\">Toutes les personnes qui ont particip\u00e9 savaient qu\u2019elles ne seraient peut-\u00eatre plus l\u00e0 pour voir les r\u00e9sultats. Leur engagement a \u00e9t\u00e9 tout simplement extraordinaire.<\/blockquote>\n                    <div class=\"quote__attribution\">\n                                    <div class=\"attribution-name\">Clare\u00a0Durrett<\/div>\n                                                    <div class=\"attribution-description\">Directrice g\u00e9n\u00e9rale, Answer\u00a0ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a65ffc0ac989\" class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_88e0d10d6424e6c8b65f9c2124dc8d5c\"\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=\"Une femme d\u2019\u00e2ge moyen aux cheveux blonds et aux lunettes, v\u00eatue d\u2019un haut noir, dans un bureau moderne \u00e9quip\u00e9 d\u2019ordinateurs et d\u2019\u0153uvres encadr\u00e9es.\"\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_6a65ffc0ac31e\"\n    class=\"spacer spacer-2 spacer-mobile-2 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_75cce2c03476253bf28291ae0ff74428\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__gauche pullquote__h5\">\n        <blockquote class=\"quote quote__h5 quote--show-marks\">Parce que Neuromine peut fournir rapidement et gratuitement des donn\u00e9es \u00e0 l\u2019\u00e9chelle mondiale, il permettra de r\u00e9duire les d\u00e9lais 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\">Directrice de la gestion des donn\u00e9es et responsable de programme, Answer\u00a0ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a65ffc0b8819\" class=\"column\">\n    \n\n<div\n    id=\"block_a06ba07e375030170badecba62ea8b7a\"\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 dans un laboratoire scientifique o\u00f9 du mat\u00e9riel est visible sur les \u00e9tag\u00e8res \u00e0 l\u2019arri\u00e8re-plan.\"\n            loading=\"lazy\"\n            decoding=\"async\" \/>\n            <\/picture>\n            <\/div>\n<\/div>\n\n\n\n<div\n    id=\"block_6a65ffc0b816f\"\n    class=\"spacer spacer-2 spacer-mobile-2 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_e7ee9f0102fdd5b676b16ce92bcf42cc\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__gauche pullquote__h5\">\n        <blockquote class=\"quote quote__h5 quote--show-marks\">Je suis particuli\u00e8rement enthousiaste face \u00e0 certains r\u00e9sultats r\u00e9cents qui nous permettent de distinguer les cellules provenant de patients atteints de SLA gr\u00e2ce aux donn\u00e9es de Answer\u00a0ALS.<\/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_6a65ffc0b8c11\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_6a65ffc0bd69c\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a65ffc0b8fea\" class=\"column column--empty\">\n    \n\n<div\n    id=\"block_6a65ffc0b8efa\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a65ffc0bd569\" class=\"column column-vertical-align--haut\">\n    \n\n<div\n    id=\"block_6a65ffc0b91fe\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n\n<div\n    id=\"block_6a65ffc0b93e6\"\n    class=\"rich-text transition--in-up \">\n    <h3 class=\"--h4\">Des donn\u00e9es ouvertes, un v\u00e9ritable \u00e9lan<\/h3>\n<p>Un nouveau mod\u00e8le de recherche sur les maladies rares est en train d\u2019\u00e9merger. Un mod\u00e8le dans lequel les donn\u00e9es ouvertes, les capacit\u00e9s avanc\u00e9es de calcul et l\u2019innovation port\u00e9e par les communaut\u00e9s travaillent de concert pour raccourcir le chemin qui m\u00e8ne de l\u2019hypoth\u00e8se \u00e0 la d\u00e9couverte. Pour les personnes atteintes de SLA, qui n\u2019ont souvent pas le luxe d\u2019attendre, cette acc\u00e9l\u00e9ration ouvre la perspective d\u2019une voie plus claire vers un traitement curatif.<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a65ffc0b9612\"\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_b0ad27b07a066db55ca708b3fa31b40e-topics-label\"\n\tid=\"block_b0ad27b07a066db55ca708b3fa31b40e\">\n\t<div class=\"story-tags__inner\">\n\t\t<span class=\"story-tags__label\" id=\"block_b0ad27b07a066db55ca708b3fa31b40e-topics-label\">Topics:<\/span>\n\t\t\t\t\t\t<a class=\"story-tags__link\" href=\"https:\/\/unlocked.microsoft.com\/fr\/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\/tag\/la-sante\/\">La sant\u00e9<\/a>\n\t\t\t\t\t<a class=\"story-tags__link\" href=\"https:\/\/unlocked.microsoft.com\/fr\/tag\/lia\/\">L\u2019IA<\/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_6a65ffc0bd9a3\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tous-only\">\n<\/div>\n\n\n\n\n<div id=\"block_1851249fc0316cf2aa7f36a7be0e3593\" 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\">Les histoires individuelles deviennent une 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, Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a65ffc0be0e1\"\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 de permettre aux chercheurs d\u2019avancer plus rapidement, ensemble.<\/p>\n","protected":false},"parent":0,"menu_order":0,"template":"","meta":{"_acf_changed":true},"tags":[296,307,404],"class_list":["post-42030","stories","type-stories","status-publish","hentry","tag-donnees","tag-lia","tag-la-sante","collections-thriving-communities","entry","page-content"],"acf":{"featured_media_featured_scrim_color":"#000000","featured_media_card_ratio":"1-1","featured_media_card_image":30517,"featured_media_card_video":"","featured_media_card_video_button_desc":"","featured_media_featured_image":30544,"featured_media_featured_video":"","featured_media_featured_video_button_desc":"","featured_media_featured_headline":"","featured_media_featured_excerpt":"","featured_media_search_image":29474,"featured_media_search_card_image":30571,"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\/wp-json\/wp\/v2\/stories\/42030","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/unlocked.microsoft.com\/fr\/wp-json\/wp\/v2\/stories"}],"about":[{"href":"https:\/\/unlocked.microsoft.com\/fr\/wp-json\/wp\/v2\/types\/stories"}],"wp:attachment":[{"href":"https:\/\/unlocked.microsoft.com\/fr\/wp-json\/wp\/v2\/media?parent=42030"}],"wp:term":[{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/unlocked.microsoft.com\/fr\/wp-json\/wp\/v2\/tags?post=42030"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}