{"id":42042,"date":"2026-03-26T10:09:33","date_gmt":"2026-03-26T17:09:33","guid":{"rendered":"https:\/\/unlocked.microsoft.com\/?post_type=stories&#038;p=42042"},"modified":"2026-07-10T10:09:57","modified_gmt":"2026-07-10T17:09:57","slug":"quando-os-dados-avancam-mais-rapido-a-esperanca-avanca-junto","status":"publish","type":"stories","link":"https:\/\/unlocked.microsoft.com\/pt-br\/quando-os-dados-avancam-mais-rapido-a-esperanca-avanca-junto\/","title":{"rendered":"Quando os dados avan\u00e7am mais r\u00e1pido, a esperan\u00e7a avan\u00e7a junto"},"content":{"rendered":"\n<div\n    id=\"block_42d47208889a4d4fc4850ab25705cb1d\"\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                                    Quando os dados avan\u00e7am mais r\u00e1pido, a esperan\u00e7a avan\u00e7a junto                                <\/h1>\n                                <\/div>\n                <div class=\"split-feature__excerpt-wrapper\">\n            <div class=\"split-feature__excerpt\">Pessoas que vivem com ELA est\u00e3o optando por compartilhar seus dados por meio do Neuromine para que pesquisadores possam avan\u00e7ar mais r\u00e1pido, juntos<\/div>                                <\/div>\n    <\/div>\n<\/div>\n<div class=\"split-feature__media transition--media\">\n    \n<div class=\"unlocked-media media-image js-media-image\">\n                        <picture class=\"\">\n                        <source\n            srcset=\"https:\/\/unlocked.microsoft.com\/wp-content\/uploads\/2026\/03\/als-hero-01.jpg 1356w, 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width=\"24\" height=\"24\" aria-hidden=\"true\" aria-labelledby=\"icon-6a68882362dfc\" 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-6a68882362dfc\">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_6a68882362f05\"\n    class=\"spacer spacer-4 spacer-mobile-2 spacer--tudo-only\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_bb34f2046a8240410ab1bff0b6082591\"\n    class=\"publication-date \">\n    <p class=\"publication-date__text\">mar\u00e7o 26, 2026<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a688823635a7\"\n    class=\"spacer spacer-4 spacer-mobile-2 spacer--tudo-only\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a688823637bb\"\n    class=\"rich-text transition--in-up \">\n    <h4 class=\"--h4\">Estima-se que 450 mil pessoas em todo o mundo vivam com ELA.<\/h4>\n<p class=\"--h5\">N\u00e3o existe cura.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a688823672e3\" class=\"column column-vertical-align--in\u00edcio\">\n    \n\n<div\n    id=\"block_6a68882364396\"\n    class=\"rich-text transition--in-up \">\n    <p>Para as pessoas que vivem com ELA, cada segundo importa. Ap\u00f3s o diagn\u00f3stico, muitas pessoas t\u00eam apenas de dois a cinco anos ao lado de amigos e familiares. As fam\u00edlias passam a conviver com um novo vocabul\u00e1rio: sondas de alimenta\u00e7\u00e3o, dispositivos de mobilidade, perda da voz, enquanto um rel\u00f3gio diferente e mais silencioso come\u00e7a a correr nos laborat\u00f3rios de pesquisa. Os longos prazos da pesquisa nem sempre acompanham a urg\u00eancia vivida nas cl\u00ednicas, e foi essa diferen\u00e7a que o <a href=\"https:\/\/www.answerals.org\/\" target=\"_blank\" rel=\"noopener\">Answer ALS<\/a> se prop\u00f4s a mudar.<\/p>\n<p>O Answer ALS surgiu de uma ideia simples, mas poderosa: as pessoas com ELA s\u00e3o mais do que apenas pacientes em um sistema. Elas podem contribuir ativamente para o progresso. Quando optam por compartilhar seus dados, de forma segura, respons\u00e1vel e em benef\u00edcio de todos, podem abrir caminho para um futuro muito diferente para a pesquisa.<\/p>\n<p>O Answer ALS re\u00fane pesquisadores, pessoas que vivem com ELA e defensores da causa em um esfor\u00e7o aberto e colaborativo para acelerar a descoberta de tratamentos e curas. O objetivo \u00e9 oferecer acesso seguro a dados cl\u00ednicos e biol\u00f3gicos detalhados, al\u00e9m das amostras biol\u00f3gicas associadas, para que cientistas possam identificar subgrupos biol\u00f3gicos, biomarcadores e alvos terap\u00eauticos. Mas, historicamente, ter dados n\u00e3o era o mesmo que compartilh\u00e1-los de uma forma que realmente ajudasse os pesquisadores a avan\u00e7ar mais r\u00e1pido.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a68882368182\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tudo-only\">\n<\/div>\n\n\n\n\n<div id=\"block_a4b84e57b55da3164b9bad5e240f8e5a\" class=\"video-player\">\n    <div id=\"videoplayer-1\" class=\"video-player__wrapper js-video-player theme-overlay  has-overlay-image\" aria-label=\"Assista \u201cCada segundo importa\u201d\">\n        <div\n            id=\"video-player-overlay-e0471d14-f3ad-433a-8c2e-4295629c4e6a\"\n            class=\"video-player__overlay js-video-player-overlay\"\n            data-label-video-title=\"\u201cCada segundo importa\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            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class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a688823ae15f\" class=\"column column-vertical-align--in\u00edcio\">\n    \n\n<div\n    id=\"block_6a688823ae04f\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a688823ae5fd\" class=\"column column-vertical-align--in\u00edcio\">\n    \n\n<div\n    id=\"block_6a688823ae338\"\n    class=\"rich-text transition--in-up \">\n    <h3 class=\"--h4\">O desafio que mudou o ritmo<\/h3>\n<p>O Answer ALS tinha dados essenciais: uma ampla vis\u00e3o multi\u00f4mica da ELA entre os participantes, incluindo sequenciamento completo do genoma, ricos dados cl\u00ednicos longitudinais e modelos neurais baseados em c\u00e9lulas-tronco derivadas de pacientes. Ainda assim, a primeira tentativa de compartilh\u00e1-los por meio de uma institui\u00e7\u00e3o acad\u00eamica nunca foi projetada para ganhar escala.<\/p>\n<p>Na pr\u00e1tica, funcionava mais como um reposit\u00f3rio b\u00e1sico de arquivos, um lugar onde tudo estava armazenado, mas n\u00e3o de uma forma f\u00e1cil de navegar. Embora os pesquisadores pudessem selecionar coortes espec\u00edficas, isso exigia conhecimento de linha de comando e um alto n\u00edvel de especializa\u00e7\u00e3o computacional. Para muitos cientistas e profissionais cl\u00ednicos, at\u00e9 mesmo perguntas simples, como: &#8220;Posso isolar dados de mulheres com ELA?&#8221; eram dif\u00edceis de responder sem suporte t\u00e9cnico significativo. Isso limitava a capacidade da plataforma de oferecer uma explora\u00e7\u00e3o eficiente e aut\u00f4noma dos dados.<\/p>\n<p>Pior ainda, o fluxo de trabalho restringia discretamente quem podia participar. Se a pessoa n\u00e3o se sentisse confort\u00e1vel trabalhando com linha de comando ou n\u00e3o tivesse recursos robustos de computa\u00e7\u00e3o e armazenamento, esse conjunto de dados &#8220;aberto&#8221; n\u00e3o era realmente aberto. E, como a plataforma n\u00e3o havia sido criada para ser um recurso p\u00fablico e seguro (o cerne da miss\u00e3o do Answer ALS), compartilhar dados globalmente e em escala era um desafio.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a688823ae9a8\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tudo-only\">\n<\/div>\n\n\n\n\n<div id=\"block_6a688823bb689\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a688823baed9\" class=\"column column-vertical-align--in\u00edcio\">\n    \n\n<div\n    id=\"block_2900904f074cf8b926b1d8c5c44397a6\"\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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\">\n    <h4 class=\"--h4\">Avan\u00e7ar mais r\u00e1pido, investir mais e colaborar intensamente<\/h4>\n<p>Para Steve Gleason, isso \u00e9 uma diretriz.<\/p>\n<p>O ex-jogador do New Orleans Saints ajudou a redefinir o que \u00e9 poss\u00edvel para as pessoas que vivem com ELA. Diagnosticado em 2011, Steve transformou sua pr\u00f3pria experi\u00eancia em uma plataforma de a\u00e7\u00e3o, defendendo mais apoio, melhores tecnologias e avan\u00e7os mais r\u00e1pidos na pesquisa.<\/p>\n<blockquote>\n<h6 class=\"--h6\">\u201cEu costumo dizer que fui diagnosticado com ELA para que milh\u00f5es de pessoas no futuro n\u00e3o sejam diagnosticadas\u201d, disse Steve Gleason, fundador e membro do conselho do Answer ALS.<\/h6>\n<\/blockquote>\n<p>Muitos f\u00e3s da NFL se lembram dele por um momento ic\u00f4nico: um punt bloqueado em uma partida de 2006. Em 2012, uma est\u00e1tua de bronze em frente ao Superdome eternizou esse momento. Hoje, ele ajuda a superar as barreiras que desaceleram o acesso e o progresso para outras pessoas com ELA.<\/p>\n<p>Como defensor da causa h\u00e1 muitos anos, Steve sempre sustentou que pessoas com ELA n\u00e3o deveriam ter de esperar por uma cura para continuar tendo uma vida plena. Por meio de outra organiza\u00e7\u00e3o sem fins lucrativos, a <a href=\"https:\/\/teamgleason.org\/\" target=\"_blank\" rel=\"noopener\">Team Gleason<\/a>, ele ajudou milhares de pessoas com ELA e outras condi\u00e7\u00f5es neuromusculares a ter acesso a ferramentas e servi\u00e7os pr\u00e1ticos que preservam sua independ\u00eancia hoje, especialmente em comunica\u00e7\u00e3o e mobilidade. Com foco em conectar pessoas a tecnologia adaptativa e equipamentos especializados, a organiza\u00e7\u00e3o promove a conscientiza\u00e7\u00e3o e impulsiona os esfor\u00e7os para acabar com a ELA.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a688823bb953\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tudo-only\">\n<\/div>\n\n\n\n\n<div id=\"block_e8c9c254d8fac65d42fb6a02878f7508\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__centro pullquote__h4\">\n        <blockquote class=\"quote quote__h4 quote--show-marks\">A tecnologia devolve o que a ELA tira. Minha voz, minha mobilidade e minha capacidade de me conectar e criar.<\/blockquote>\n                    <div class=\"quote__attribution\">\n                                    <div class=\"attribution-name\">Steve Gleason<\/div>\n                                                    <div class=\"attribution-description\">Fundador e membro do conselho, Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a688823bd169\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tudo-only\">\n<\/div>\n\n\n\n\n<div id=\"block_6a688823bda81\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a688823bd54b\" class=\"column column--empty\">\n    \n\n<div\n    id=\"block_6a688823bd45c\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a688823bd936\" class=\"column\">\n    \n\n<div\n    id=\"block_6a688823bd709\"\n    class=\"rich-text transition--in-up \">\n    <h3 class=\"--h4\">Desenvolvido para pesquisadores e projetado para velocidade<\/h3>\n<p>O Answer ALS transformou o senso de urg\u00eancia de Steve Gleason no Neuromine, uma plataforma compartilhada de pesquisa criada para tornar os dados sobre ELA mais f\u00e1ceis de encontrar, filtrar e utilizar. Assim, os pesquisadores conseguem acessar os dados de que precisam sem ter de enfrentar desafios de infraestrutura antes de enfrentar a doen\u00e7a.<\/p>\n<p>Desenvolvido com base em privacidade, seguran\u00e7a e respeito pelas pessoas cujos dados impulsionam esse trabalho, o Neuromine \u00e9 executado no Azure. Com essa base, os pesquisadores podem localizar conjuntos relevantes de dados por meio de pesquisa e filtragem, selecionar coortes espec\u00edficas e levar os dados para seus pr\u00f3prios ambientes de trabalho. A conex\u00e3o clara com amostras biol\u00f3gicas e recursos de linhagens celulares ajuda as equipes a avan\u00e7ar da descoberta para a valida\u00e7\u00e3o, em vez de ficarem presas em um &#8220;resultado interessante, mas sem um pr\u00f3ximo passo claro&#8221;. A governan\u00e7a e os controles de acesso foram estruturados para manter o portal amplamente acess\u00edvel sem desacelerar pesquisas leg\u00edtimas.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a688823bdce9\"\n    class=\"spacer spacer-9 spacer-mobile-4 spacer--tudo-only\">\n<\/div>\n\n\n\n\n<div id=\"block_6a688823d446e\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a688823be54a\" class=\"column column-vertical-align--in\u00edcio\">\n    \n\n\n<div\n    id=\"block_6a688823bdfc1\"\n    class=\"spacer spacer-11 spacer-mobile-0 spacer--tudo-only\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a688823be196\"\n    class=\"rich-text transition--in-up \">\n    <p class=\"--h4\">De 72 semanas para duas<\/p>\n<p class=\"unformatted\">Historicamente, obter um conjunto de dados pronto para an\u00e1lise podia levar de 12 a 18 meses. Com o Neuromine, os pesquisadores podem passar da hip\u00f3tese ao acesso aos dados, e \u00e0s amostras biol\u00f3gicas correspondentes, em cerca de duas semanas.<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a688823be3a6\"\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_6a688823d4347\" class=\"column column-vertical-align--in\u00edcio\">\n    \n\n<div\n    id=\"block_d86817f5917e75e8ea01357c4dbaba98\"\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\">Neur\u00f4nios vivos com ELA.<\/div>\n        <\/div>\n<\/div>\n<\/div>\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a688823d472d\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tudo-only\">\n<\/div>\n\n\n\n\n<div id=\"block_6a688823d570e\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a688823d4b74\" class=\"column column--empty\">\n    \n\n<div\n    id=\"block_6a688823d4a3a\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a688823d5612\" class=\"column column-vertical-align--in\u00edcio\">\n    \n\n<div\n    id=\"block_6a688823d4dae\"\n    class=\"rich-text transition--in-up \">\n    <p>O Neuromine j\u00e1 viabilizou mais de 520 projetos de pesquisa, que v\u00e3o desde salas de aula do ensino m\u00e9dio at\u00e9 importantes institui\u00e7\u00f5es de pesquisa. Dados de mais de 1.100 participantes do Answer ALS agora est\u00e3o harmonizados e dispon\u00edveis no Neuromine, juntamente com os dados da ALS Research Collaborative (ARC), do ALS Therapy Development Institute, permitindo que pesquisadores analisem mais de 2.500 perfis de pacientes com ELA em um \u00fanico lugar. O Answer ALS estima que esse modelo possa acelerar os cronogramas de pesquisa em at\u00e9 65% nos pr\u00f3ximos anos. Pela primeira vez, pesquisadores podem analisar a ELA em uma escala e profundidade capazes de revelar padr\u00f5es que nenhuma pessoa conseguiria identificar sozinha.<\/p>\n<p>Abordagens de aprendizado de m\u00e1quina est\u00e3o revelando rela\u00e7\u00f5es gen\u00e9ticas antes invis\u00edveis, incluindo um grupo promissor de genes chamados nucleoporinas, que regulam o tr\u00e1fego para dentro e para fora do n\u00facleo celular. Os primeiros ind\u00edcios sugerem que combina\u00e7\u00f5es de muta\u00e7\u00f5es nesses genes podem ajudar a explicar por que algumas pessoas apresentam r\u00e1pida progress\u00e3o da doen\u00e7a, enquanto outras vivem por muitos anos. Agora, as equipes podem validar essas descobertas transformando c\u00e9lulas sangu\u00edneas de pacientes em neur\u00f4nios e utilizando microsc\u00f3pios rob\u00f3ticos e biossensores para observar a ELA se desenvolver dentro das c\u00e9lulas em tempo real.<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a688823d50b9\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tudo-only\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a688823d53ef\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n<div id=\"block_6a688824035d0\" class=\"row row--space-between column__container mobile-column-gap-6 column--layout-33-33-33\">\n    \n<div id=\"block-column_6a688823e10fc\" class=\"column column-vertical-align--in\u00edcio\">\n    \n\n<div\n    id=\"block_7a0dc7c48709a437539354d34e571b51\"\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=\"Mulher de meia-idade, com cabelos loiros e \u00f3culos de arma\u00e7\u00e3o preta, usando um blazer bege e olhando pensativamente para o lado.\"\n            loading=\"lazy\"\n            decoding=\"async\" \/>\n            <\/picture>\n            <\/div>\n<\/div>\n\n\n\n<div\n    id=\"block_6a688823e0a6a\"\n    class=\"spacer spacer-2 spacer-mobile-2 spacer--tudo-only\">\n<\/div>\n\n\n\n\n<div id=\"block_194f6de0f5cd9264a6ba03d0ce651ec1\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__esquerda pullquote__h5\">\n        <blockquote class=\"quote quote__h5 quote--show-marks\">Todos os participantes sabiam que talvez n\u00e3o estivessem aqui para ver os resultados. O comprometimento deles foi realmente extraordin\u00e1rio.<\/blockquote>\n                    <div class=\"quote__attribution\">\n                                    <div class=\"attribution-name\">Clare Durrett<\/div>\n                                                    <div class=\"attribution-description\">Diretora-geral, Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a688823ec4f2\" class=\"column column-vertical-align--in\u00edcio\">\n    \n\n<div\n    id=\"block_717fb8d1bef8533a92ce132dfaabb482\"\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=\"Mulher de meia-idade, com cabelos loiros e \u00f3culos, usando uma blusa preta em um escrit\u00f3rio moderno com computadores e quadros decorativos.\"\n            loading=\"lazy\"\n            decoding=\"async\" \/>\n            <\/picture>\n            <\/div>\n<\/div>\n\n\n\n<div\n    id=\"block_6a688823ebeaa\"\n    class=\"spacer spacer-2 spacer-mobile-2 spacer--tudo-only\">\n<\/div>\n\n\n\n\n<div id=\"block_4cd0b809a9fda831bfbfab58dd062a8a\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__esquerda pullquote__h5\">\n        <blockquote class=\"quote quote__h5 quote--show-marks\">Como o Neuromine pode disponibilizar dados de forma r\u00e1pida, aberta e em escala global, o tempo necess\u00e1rio para novas descobertas pode ser reduzido em meses, ou at\u00e9 anos.<\/blockquote>\n                    <div class=\"quote__attribution\">\n                                    <div class=\"attribution-name\">Terri Thompson, PhD<\/div>\n                                                    <div class=\"attribution-description\">Diretora de gest\u00e3o de dados e gerente de programa, Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a68882403492\" class=\"column\">\n    \n\n<div\n    id=\"block_283efb456366b82c8450944d992f6a23\"\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=\"Mulher de cabelos castanhos ondulados usando uma blusa branca estampada em um laborat\u00f3rio cient\u00edfico, com equipamentos ao fundo.\"\n            loading=\"lazy\"\n            decoding=\"async\" \/>\n            <\/picture>\n            <\/div>\n<\/div>\n\n\n\n<div\n    id=\"block_6a68882402dec\"\n    class=\"spacer spacer-2 spacer-mobile-2 spacer--tudo-only\">\n<\/div>\n\n\n\n\n<div id=\"block_e1133e2dfe9ac1415cd62b21e536ae4d\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__esquerda pullquote__h5\">\n        <blockquote class=\"quote quote__h5 quote--show-marks\">Estou muito entusiasmada com alguns dos resultados recentes, nos quais conseguimos diferenciar c\u00e9lulas provenientes de pacientes com ELA utilizando os dados do Answer ALS.<\/blockquote>\n                    <div class=\"quote__attribution\">\n                                    <div class=\"attribution-name\">Julia Kaye, PhD<\/div>\n                                                    <div class=\"attribution-description\">Pesquisadora, 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_6a68882403857\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tudo-only\">\n<\/div>\n\n\n\n\n<div id=\"block_6a68882404fc5\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a68882403c2f\" class=\"column column--empty\">\n    \n\n<div\n    id=\"block_6a68882403b40\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a68882404eca\" class=\"column column-vertical-align--in\u00edcio\">\n    \n\n<div\n    id=\"block_6a68882403dea\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n\n<div\n    id=\"block_6a68882404004\"\n    class=\"rich-text transition--in-up \">\n    <h3 class=\"--h4\">Dados abertos, progresso real<\/h3>\n<p>Um novo modelo para a pesquisa de doen\u00e7as raras est\u00e1 surgindo. Um modelo em que dados abertos, computa\u00e7\u00e3o avan\u00e7ada e inova\u00e7\u00e3o impulsionada pela comunidade trabalham juntos para encurtar o caminho entre uma hip\u00f3tese e uma descoberta. Para as pessoas que vivem com ELA, que muitas vezes n\u00e3o t\u00eam tempo para esperar, essa acelera\u00e7\u00e3o representa a possibilidade de um caminho mais claro rumo \u00e0 cura.<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a6888240423c\"\n    class=\"spacer spacer-4 spacer-mobile-2 spacer--tudo-only\">\n<\/div>\n\n\n\n<nav\n\tclass=\"story-tags ticss-db52dfad\"\n\taria-labelledby=\"block_def1323e08b34b4a50c710ae918f9912-topics-label\"\n\tid=\"block_def1323e08b34b4a50c710ae918f9912\">\n\t<div class=\"story-tags__inner\">\n\t\t<span class=\"story-tags__label\" id=\"block_def1323e08b34b4a50c710ae918f9912-topics-label\">Topics:<\/span>\n\t\t\t\t\t\t<a class=\"story-tags__link\" href=\"https:\/\/unlocked.microsoft.com\/pt-br\/tag\/dados\/\">Dados<\/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\/pt-br\/tag\/ia\/\">IA<\/a>\n\t\t\t\t\t<a class=\"story-tags__link\" href=\"https:\/\/unlocked.microsoft.com\/pt-br\/tag\/saude\/\">Sa\u00fade<\/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_6a68882405238\"\n    class=\"spacer spacer-6 spacer-mobile-4 spacer--tudo-only\">\n<\/div>\n\n\n\n\n<div id=\"block_93373aa8ec15aa520b0a72b0b17125e1\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__centro pullquote__h4\">\n        <blockquote class=\"quote quote__h4 quote--show-marks\"><span data-teams=\"true\">Isso transforma hist\u00f3rias individuais em for\u00e7a coletiva. Dados abertos aceleram tudo.<\/span><\/blockquote>\n                    <div class=\"quote__attribution\">\n                                    <div class=\"attribution-name\">Steve Gleason<\/div>\n                                                    <div class=\"attribution-description\">Fundador e membro do conselho, Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a6888240594a\"\n    class=\"spacer spacer-9 spacer-mobile-6 spacer--tudo-only\">\n<\/div>\n\n","protected":false},"excerpt":{"rendered":"<p>Pessoas que vivem com ELA est\u00e3o optando por compartilhar seus dados por meio do Neuromine para que pesquisadores possam avan\u00e7ar mais r\u00e1pido, juntos<\/p>\n","protected":false},"parent":0,"menu_order":0,"template":"","meta":{"_acf_changed":true},"tags":[272,334,416],"class_list":["post-42042","stories","type-stories","status-publish","hentry","tag-dados","tag-ia","tag-saude","collections-thriving-communities","entry","page-content"],"acf":{"featured_media_featured_scrim_color":"#000000","featured_media_card_ratio":"1-1","featured_media_card_image":30529,"featured_media_card_video":"","featured_media_card_video_button_desc":"","featured_media_featured_image":30556,"featured_media_featured_video":"","featured_media_featured_video_button_desc":"","featured_media_featured_headline":"","featured_media_featured_excerpt":"","featured_media_search_image":29486,"featured_media_search_card_image":30583,"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\/pt-br\/wp-json\/wp\/v2\/stories\/42042","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/unlocked.microsoft.com\/pt-br\/wp-json\/wp\/v2\/stories"}],"about":[{"href":"https:\/\/unlocked.microsoft.com\/pt-br\/wp-json\/wp\/v2\/types\/stories"}],"wp:attachment":[{"href":"https:\/\/unlocked.microsoft.com\/pt-br\/wp-json\/wp\/v2\/media?parent=42042"}],"wp:term":[{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/unlocked.microsoft.com\/pt-br\/wp-json\/wp\/v2\/tags?post=42042"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}