{"id":42043,"date":"2026-03-26T10:09:33","date_gmt":"2026-03-26T17:09:33","guid":{"rendered":"https:\/\/unlocked.microsoft.com\/?post_type=stories&#038;p=42043"},"modified":"2026-07-10T10:09:51","modified_gmt":"2026-07-10T17:09:51","slug":"quando-os-dados-se-movem-mais-depressa-a-esperanca-tambem-se-move-mais-depressa","status":"publish","type":"stories","link":"https:\/\/unlocked.microsoft.com\/pt-pt\/quando-os-dados-se-movem-mais-depressa-a-esperanca-tambem-se-move-mais-depressa\/","title":{"rendered":"Quando os dados se movem mais depressa, a esperan\u00e7a tamb\u00e9m se move mais depressa"},"content":{"rendered":"\n<div\n    id=\"block_031eeefde5bbb53590c46e18640124ff\"\n    class=\"split-feature split-feature--inset-image split-feature--right split-feature--bottom js-split-feature js-parallax \">\n    <div class=\"split-feature__content js-split-feature-content\">\n        <div class=\"transition--in-up\">\n            <div class=\"split-feature__header-wrapper\">\n                                <h1 class=\"split-feature__header split-feature__header__size-h2\">\n                                    Quando os dados se movem mais depressa, a esperan\u00e7a tamb\u00e9m se move mais depressa                                <\/h1>\n                                <\/div>\n                <div class=\"split-feature__excerpt-wrapper\">\n            <div class=\"split-feature__excerpt\">As pessoas que sofrem de ELA est\u00e3o a optar por partilhar os seus dados atrav\u00e9s da Neuromine, para que os investigadores possam avan\u00e7ar mais r\u00e1pido, em conjunto<\/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_6a8e8f9853a73\"\n    class=\"spacer spacer-6 spacer-mobile-2\">\n<\/div>\n\n\n\n\n<div id=\"block_6a8e8f9858fd5\" class=\"row row--space-between column__container mobile-column-gap-1 column--layout-40-60\">\n    \n<div id=\"block-column_6a8e8f9855f83\" class=\"column column-vertical-align--top\">\n    \n<div\n    id=\"block_d696644eb56b108ecb312b335996c1a0\"\n    class=\"share-block \">\n    \n<section\n    class=\"social-share js-social-share social-share--left\"\n        aria-label=\"Share Quando os dados se movem mais depressa, a esperan\u00e7a tamb\u00e9m se move mais depressa 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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LinkedIn\"\n            >\n        <svg class=\"svg-icon\" width=\"24\" height=\"24\" aria-hidden=\"true\" aria-labelledby=\"icon-6a8e8f98550df\" 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-6a8e8f98550df\">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_6a8e8f98551dc\"\n    class=\"spacer spacer-4 spacer-mobile-2\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_90f71ebd92ee247d4fdb3d90dfabd93a\"\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_6a8e8f9855871\"\n    class=\"spacer spacer-4 spacer-mobile-2\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8e8f9855a6c\"\n    class=\"rich-text transition--in-up \">\n    <h4 class=\"--h4\">Estima-se que 450 000 pessoas em todo o mundo sofram de ELA.<\/h4>\n<p class=\"--h5\">N\u00e3o existe cura.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a8e8f9858e64\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_6a8e8f9856491\"\n    class=\"rich-text transition--in-up \">\n    <p>Para as pessoas que sofrem de ELA, cada segundo conta. Ap\u00f3s o diagn\u00f3stico, muitas pessoas disp\u00f5em de apenas 2 a 5 anos com amigos e entes queridos. As fam\u00edlias aprendem um novo vocabul\u00e1rio \u2014 tubos de alimenta\u00e7\u00e3o, dispositivos de mobilidade, perda da voz \u2014 enquanto um rel\u00f3gio diferente e mais silencioso come\u00e7a a contar o tempo nos laborat\u00f3rios de investiga\u00e7\u00e3o. Os longos prazos da investiga\u00e7\u00e3o nem sempre correspondem \u00e0 urg\u00eancia sentida na cl\u00ednica e \u00e9 essa discrep\u00e2ncia que a <a href=\"https:\/\/www.answerals.org\/\" target=\"_blank\" rel=\"noopener\">Answer ALS<\/a> se prop\u00f4s a alterar.<\/p>\n<p>A Answer ALS come\u00e7ou com uma ideia simples, mas poderosa: as pessoas com ELA s\u00e3o mais do que apenas doentes no sistema. Podem contribuir ativamente para o progresso. Quando as pessoas optam por partilhar os seus dados, de forma segura, respons\u00e1vel e para o bem comum, podem desbloquear um futuro muito diferente para a investiga\u00e7\u00e3o.<\/p>\n<p>A Answer ALS re\u00fane investigadores, pessoas que vivem com ELA e defensores da causa num esfor\u00e7o aberto e colaborativo para acelerar a descoberta de tratamentos e curas. O objetivo \u00e9 proporcionar acesso seguro a dados cl\u00ednicos e biol\u00f3gicos detalhados, assim como a amostras biol\u00f3gicas associadas, para que os cientistas possam identificar subgrupos biol\u00f3gicos, biomarcadores e alvos terap\u00eauticos. Contudo, historicamente, ter dados n\u00e3o era o mesmo que os partilhar de uma forma que realmente ajudasse os investigadores a avan\u00e7arem mais depressa.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8e8f9859c64\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n\n\n<div id=\"block_c43ba1334f0612f3077b54d6327cb518\" class=\"video-player\">\n    <div id=\"videoplayer-1\" class=\"video-player__wrapper js-video-player theme-overlay  has-overlay-image\" aria-label=\"Ver &quot;Cada segundo conta&quot;\">\n        <div\n            id=\"video-player-overlay-ef7d69a8-099b-49c9-ac6a-712df91e1078\"\n            class=\"video-player__overlay js-video-player-overlay\"\n            data-label-video-title=\"\"Cada segundo conta\"\"\n            data-label-desktop=\"A man using assistive breathing equipment holds a young girl in a white shirt as they both look upward together indoors.\"\n            data-label-mobile=\"\">\n            <div 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row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a8e8f98a184b\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_6a8e8f98a1755\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a8e8f98a1c67\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_6a8e8f98a1a05\"\n    class=\"rich-text transition--in-up \">\n    <h3 class=\"--h4\">O desafio que mudou o ritmo<\/h3>\n<p>A Answer ALS possu\u00eda dados essenciais: uma vasta perspetiva multi\u00f3mica da ELA sobre todos os participantes, incluindo dados como a sequencia\u00e7\u00e3o do genoma completo, dados cl\u00ednicos longitudinais abrangentes e modelos neuronais derivados de c\u00e9lulas estaminais dos doentes. No entanto, a primeira tentativa de partilhar esses dados, atrav\u00e9s de uma institui\u00e7\u00e3o acad\u00e9mica, nunca foi concebida para funcionar \u00e0 escala necess\u00e1ria.<\/p>\n<p>Na pr\u00e1tica, funcionava mais como um reposit\u00f3rio b\u00e1sico de ficheiros, ou um local onde tudo estava armazenado, mas n\u00e3o de uma forma f\u00e1cil de navegar. Embora os investigadores pudessem tecnicamente selecionar coortes espec\u00edficas, faz\u00ea-lo exigia conhecimentos de linha de comandos e um elevado n\u00edvel de especializa\u00e7\u00e3o computacional. Para muitos cientistas e cl\u00ednicos, at\u00e9 perguntas simples, como &#8220;Posso isolar dados sobre mulheres com ELA?&#8221;, eram dif\u00edceis de responder sem apoio t\u00e9cnico significativo. Isto limitava a capacidade da plataforma para permitir uma descoberta aut\u00f3noma eficiente.<\/p>\n<p>Pior ainda, o fluxo de trabalho restringia discretamente quem podia participar. Quem n\u00e3o se sentisse confort\u00e1vel a trabalhar com linhas de comandos ou n\u00e3o possu\u00edsse compet\u00eancias avan\u00e7adas de computa\u00e7\u00e3o e armazenamento de dados verificava que este conjunto de dados &#8220;aberto&#8221; n\u00e3o era verdadeiramente aberto. E, porque a plataforma n\u00e3o tinha sido concebida para ser um recurso seguro e acess\u00edvel ao p\u00fablico \u2014 o pr\u00f3prio cerne da miss\u00e3o da Answer ALS, a partilha global de dados \u00e0 escala \u2014 era dif\u00edcil disponibiliz\u00e1-la de forma respons\u00e1vel.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8e8f98a1fd5\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n\n\n<div id=\"block_6a8e8f98aebdd\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a8e8f98ae486\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_d5eb149f1c765311cb757259ad0203f6\"\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         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\n\n<div\n    id=\"block_6a8e8f98ae660\"\n    class=\"rich-text transition--in-up \">\n    <h4 class=\"--h4\">Avan\u00e7ar mais depressa, financiar mais e colaborar sem limites<\/h4>\n<p>Para Steve Gleason, isso \u00e9 um imperativo.<\/p>\n<p>O antigo jogador dos New Orleans Saints ajudou a redefinir o que \u00e9 poss\u00edvel alcan\u00e7ar para as pessoas que vivem com ELA. Diagnosticado em 2011, Steve transformou a sua experi\u00eancia numa plataforma de a\u00e7\u00e3o com objetivo de obter mais apoio, melhor tecnologia e progressos mais r\u00e1pidos na \u00e1rea da investiga\u00e7\u00e3o.<\/p>\n<blockquote>\n<h6 class=\"--h6\">&#8220;Espero que, por ter sido diagnosticado com ELA, milh\u00f5es de pessoas no futuro n\u00e3o venham a ser diagnosticadas&#8221;, afirma Steve Gleason, Fundador e Membro do Conselho de Administra\u00e7\u00e3o da Answer ALS.<\/h6>\n<\/blockquote>\n<p>Muitos adeptos da NFL recordam-no por um momento ic\u00f3nico \u2014 um punt bloqueado num jogo de 2006. Em 2012, uma est\u00e1tua de bronze junto ao Superdome eternizou esse momento. Hoje, ajuda a ultrapassar as barreiras que atrasam o acesso e o progresso para outras pessoas com ELA.<\/p>\n<p>Enquanto defensor de longa data das pessoas com ELA, Steve tem insistido que estas n\u00e3o devem ter de esperar por uma cura para continuarem a viver vidas com significado. Atrav\u00e9s de outra organiza\u00e7\u00e3o sem fins lucrativos, a <a href=\"https:\/\/teamgleason.org\/\" target=\"_blank\" rel=\"noopener\">Team Gleason<\/a>, ajudou milhares de pessoas com ELA e outras doen\u00e7as neuromusculares a obter acesso a ferramentas e servi\u00e7os pr\u00e1ticos que protegem a sua independ\u00eancia \u2014 especialmente nas \u00e1reas da comunica\u00e7\u00e3o e da mobilidade. Centrada na liga\u00e7\u00e3o das pessoas a tecnologias de apoio e equipamentos adaptativos, a organiza\u00e7\u00e3o sensibiliza e acelera o impulso em dire\u00e7\u00e3o ao fim da ELA.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8e8f98aee34\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n\n\n<div id=\"block_72a6d6e398704946d498ef41c159a0f9\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__center pullquote__h4\">\n        <blockquote class=\"quote quote__h4 quote--show-marks\">A tecnologia devolve aquilo que a ELA retira. A minha voz, a minha mobilidade e a minha capacidade de comunicar e de 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 de Administra\u00e7\u00e3o, Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8e8f98b0536\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n\n\n<div id=\"block_6a8e8f98b0da3\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a8e8f98b08e5\" class=\"column column--empty\">\n    \n\n<div\n    id=\"block_6a8e8f98b0801\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a8e8f98b0c62\" class=\"column\">\n    \n\n<div\n    id=\"block_6a8e8f98b0a9e\"\n    class=\"rich-text transition--in-up \">\n    <h3 class=\"--h4\">Concebido para investigadores e desenvolvido para a velocidade<\/h3>\n<p>A Answer ALS transformou o sentido de urg\u00eancia de Steve Gleason na Neuromine \u2014 uma plataforma de investiga\u00e7\u00e3o partilhada concebida para tornar os dados de investiga\u00e7\u00e3o sobre a ELA mais f\u00e1ceis de encontrar, filtrar e utilizar. Isto fornece aos investigadores uma melhor forma de trabalhar, sem os obrigar a enfrentarem a infraestrutura antes de poderem enfrentar a doen\u00e7a.<\/p>\n<p>Assente na privacidade, na seguran\u00e7a e no respeito pelas pessoas cujos dados alimentam este trabalho, a Neuromine funciona no Azure. Com esta base, os investigadores podem localizar subconjuntos relevantes do conjunto de dados atrav\u00e9s de pesquisa e filtragem, selecionar coortes espec\u00edficas e integrar os dados nos seus pr\u00f3prios ambientes de trabalho. Liga\u00e7\u00f5es claras a bioamostras e recursos de linhas celulares ajudam as equipas a passarem da descoberta \u00e0 valida\u00e7\u00e3o, em vez de ficarem bloqueadas em situa\u00e7\u00f5es do tipo &#8220;resultado interessante, pr\u00f3ximo passo pouco claro&#8221;. A governa\u00e7\u00e3o e o acesso foram estruturados para manter o portal amplamente utiliz\u00e1vel, sem abrandar a investiga\u00e7\u00e3o leg\u00edtima.<\/p>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8e8f98b0ff7\"\n    class=\"spacer spacer-9 spacer-mobile-4\">\n<\/div>\n\n\n\n\n<div id=\"block_6a8e8f98c81b1\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a8e8f98b1835\" class=\"column column-vertical-align--top\">\n    \n\n\n<div\n    id=\"block_6a8e8f98b12b3\"\n    class=\"spacer spacer-11 spacer-mobile-0 spacer--desktop-only\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8e8f98b14a5\"\n    class=\"rich-text transition--in-up \">\n    <p class=\"--h4\">De 72 semanas para duas semanas<\/p>\n<p class=\"unformatted\">Historicamente, obter um conjunto de dados pronto para an\u00e1lise podia demorar entre 12 e 18 meses. Com a Neuromine, os investigadores podem passar da hip\u00f3tese ao acesso aos dados, e \u00e0s bioamostras correspondentes, em cerca de duas semanas.<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8e8f98b16a1\"\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_6a8e8f98c80a7\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_71c3ef842484c25d2c3a13e945e34a94\"\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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class=\"rich-text transition--in-up \">\n    <p>A Neuromine conta j\u00e1 com mais de 520 projetos de investiga\u00e7\u00e3o, abrangendo desde salas de aula de escolas secund\u00e1rias at\u00e9 institui\u00e7\u00f5es de investiga\u00e7\u00e3o de refer\u00eancia. Os dados de mais de 1100 participantes da Answer ALS encontram-se agora harmonizados e dispon\u00edveis na Neuromine, juntamente com os dados do ALS Research Collaborative (ARC) do ALS Therapy Development Institute, permitindo aos investigadores analisarem perfis de mais de 2500 doentes com ELA num \u00fanico local. A Answer ALS estima que este modelo poder\u00e1 acelerar os prazos da investiga\u00e7\u00e3o em at\u00e9 65% ao longo dos pr\u00f3ximos anos. Pela primeira vez, os investigadores conseguem analisar a ELA a uma escala e detalhe que revelam padr\u00f5es imposs\u00edveis de detetar apenas pela observa\u00e7\u00e3o humana.<\/p>\n<p>As abordagens de aprendizagem autom\u00e1tica est\u00e3o a revelar rela\u00e7\u00f5es gen\u00e9ticas at\u00e9 agora invis\u00edveis, incluindo um conjunto promissor de genes denominados nucleoporinas, que regulam o tr\u00e1fego para dentro e para fora do n\u00facleo celular. Os primeiros sinais sugerem que determinadas combina\u00e7\u00f5es de muta\u00e7\u00f5es nestes genes podem ajudar a explicar porque \u00e9 que algumas pessoas apresentam um decl\u00ednio r\u00e1pido, enquanto outras vivem durante muitos anos. Atualmente, as equipas conseguem validar estas conclus\u00f5es transformando c\u00e9lulas sangu\u00edneas de doentes em neur\u00f3nios e utilizando depois microsc\u00f3pios rob\u00f3ticos e biossensores para observar o desenrolar da ELA no interior da c\u00e9lula em tempo real.<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8e8f98c8cde\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8e8f98c8eb7\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n<div id=\"block_6a8e8f98eb53a\" class=\"row row--space-between column__container mobile-column-gap-6 column--layout-33-33-33\">\n    \n<div id=\"block-column_6a8e8f98d4923\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_2aed0b879d9b5b1c5e60591d664894ca\"\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, loira, de \u00f3culos com arma\u00e7\u00e3o preta com um casaco bege, a olhar pensativamente para o lado.\"\n            loading=\"lazy\"\n            decoding=\"async\" \/>\n            <\/picture>\n            <\/div>\n<\/div>\n\n\n\n<div\n    id=\"block_6a8e8f98d42f3\"\n    class=\"spacer spacer-2 spacer-mobile-2\">\n<\/div>\n\n\n\n\n<div id=\"block_678f4756571d943b08c696240bcb3621\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__left pullquote__h5\">\n        <blockquote class=\"quote quote__h5 quote--show-marks\">Todas as pessoas que participaram sabiam que talvez n\u00e3o estivessem presentes para ver os resultados. O seu compromisso foi verdadeiramente 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_6a8e8f98dffe4\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_528a65ca51c4eaab012dd9e876f2afc1\"\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, loira e de \u00f3culos com uma camisola preta num escrit\u00f3rio moderno com computadores e quadros emoldurados.\"\n            loading=\"lazy\"\n            decoding=\"async\" \/>\n            <\/picture>\n            <\/div>\n<\/div>\n\n\n\n<div\n    id=\"block_6a8e8f98dfa02\"\n    class=\"spacer spacer-2 spacer-mobile-2\">\n<\/div>\n\n\n\n\n<div id=\"block_3f5e7e36ed84891ef58038a6260a9c92\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__left pullquote__h5\">\n        <blockquote class=\"quote quote__h5 quote--show-marks\">A forma como a Neuromine consegue disponibilizar dados de forma r\u00e1pida, livre e global, poder\u00e1 reduzir o tempo necess\u00e1rio para as descobertas em meses, sen\u00e3o mesmo 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 Gestora de Programas, Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a8e8f98eb40e\" class=\"column\">\n    \n\n<div\n    id=\"block_c93096fdaa497dca1cac82ed06d4abcd\"\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 cabelo castanho ondulado com uma blusa branca com padr\u00e3o, de p\u00e9 num laborat\u00f3rio cient\u00edfico com equipamento em prateleiras ao fundo.\"\n            loading=\"lazy\"\n            decoding=\"async\" \/>\n            <\/picture>\n            <\/div>\n<\/div>\n\n\n\n<div\n    id=\"block_6a8e8f98eadd1\"\n    class=\"spacer spacer-2 spacer-mobile-2\">\n<\/div>\n\n\n\n\n<div id=\"block_84e49c2741fec1204390a96325cc9ae9\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__left pullquote__h5\">\n        <blockquote class=\"quote quote__h5 quote--show-marks\">Estou verdadeiramente entusiasmada com alguns dos resultados recentes, nos quais conseguimos distinguir c\u00e9lulas provenientes de doentes com ELA atrav\u00e9s dos dados da Answer ALS.<\/blockquote>\n                    <div class=\"quote__attribution\">\n                                    <div class=\"attribution-name\">Julia Kaye, PhD<\/div>\n                                                    <div class=\"attribution-description\">Investigadora, Gladstone Institutes<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8e8f98eb7b6\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n\n\n<div id=\"block_6a8e8f98ecf70\" class=\"row row--space-between column__container mobile-column-gap-4 column--layout-40-60\">\n    \n<div id=\"block-column_6a8e8f98ebb75\" class=\"column column--empty\">\n    \n\n<div\n    id=\"block_6a8e8f98eba8f\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n<\/div>\n\n\n<div id=\"block-column_6a8e8f98ece74\" class=\"column column-vertical-align--top\">\n    \n\n<div\n    id=\"block_6a8e8f98ebd27\"\n    class=\"rich-text transition--in-up \">\n    <\/div>\n\n\n\n<div\n    id=\"block_6a8e8f98ebf22\"\n    class=\"rich-text transition--in-up \">\n    <h3 class=\"--h4\">Dados abertos, um verdadeiro impulso<\/h3>\n<p>Est\u00e1 a emergir um novo modelo para a investiga\u00e7\u00e3o de doen\u00e7as raras. Um modelo que defende a combina\u00e7\u00e3o de dados abertos, computa\u00e7\u00e3o avan\u00e7ada e inova\u00e7\u00e3o impulsionada pela comunidade para encurtar o caminho entre a hip\u00f3tese e a descoberta. Para as pessoas que vivem com ELA, que muitas vezes n\u00e3o t\u00eam tempo para esperar, esta acelera\u00e7\u00e3o representa a possibilidade de um percurso mais claro rumo a uma cura.<\/p>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8e8f98ec162\"\n    class=\"spacer spacer-4 spacer-mobile-2\">\n<\/div>\n\n\n\n<nav\n\tclass=\"story-tags ticss-db52dfad\"\n\taria-labelledby=\"block_928054cbeed10c16037119ab4af08bc0-topics-label\"\n\tid=\"block_928054cbeed10c16037119ab4af08bc0\">\n\t<div class=\"story-tags__inner\">\n\t\t<span class=\"story-tags__label\" id=\"block_928054cbeed10c16037119ab4af08bc0-topics-label\">Topics:<\/span>\n\t\t\t\t\t\t<a class=\"story-tags__link\" href=\"https:\/\/unlocked.microsoft.com\/pt-pt\/tag\/cuidados-de-saude\/\">Cuidados de sa\u00fade<\/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-pt\/tag\/dados\/\">Dados<\/a>\n\t\t\t\t\t<a class=\"story-tags__link\" href=\"https:\/\/unlocked.microsoft.com\/pt-pt\/tag\/ia\/\">IA<\/a>\n\t\t\t\t<\/span>\n\t\t\t\t\t<\/div>\n<\/nav>\n\n\n<\/div>\n\n\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8e8f98ed1f0\"\n    class=\"spacer spacer-6 spacer-mobile-4\">\n<\/div>\n\n\n\n\n<div id=\"block_4e6dd409384aea66b9f04e3c43dc2871\" class=\"transition--in-up \">\n    <div class=\"pullquote pullquote__center pullquote__h4\">\n        <blockquote class=\"quote quote__h4 quote--show-marks\"><span data-teams=\"true\">Transforma hist\u00f3rias individuais em for\u00e7a coletiva. Os 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 de Administra\u00e7\u00e3o, Answer ALS<\/div>\n                            <\/div>\n                    <\/div>\n<\/div>\n\n\n\n\n<div\n    id=\"block_6a8e8f98ed8d6\"\n    class=\"spacer spacer-9 spacer-mobile-6\">\n<\/div>\n\n","protected":false},"excerpt":{"rendered":"<p>As pessoas que sofrem de esclerose lateral amiotr\u00f3fica (ELA) est\u00e3o a optar por partilhar os seus dados atrav\u00e9s da Neuromine, para que os investigadores possam avan\u00e7ar mais r\u00e1pido, em conjunto<\/p>\n","protected":false},"parent":0,"menu_order":0,"template":"","meta":{"_acf_changed":true},"tags":[417,275,338],"class_list":["post-42043","stories","type-stories","status-publish","hentry","tag-cuidados-de-saude","tag-dados","tag-ia","collections-thriving-communities","entry","page-content"],"acf":{"featured_media_featured_scrim_color":"#000000","featured_media_card_ratio":"1-1","featured_media_card_image":30530,"featured_media_card_video":"","featured_media_card_video_button_desc":"","featured_media_featured_image":30557,"featured_media_featured_video":"","featured_media_featured_video_button_desc":"","featured_media_featured_headline":"","featured_media_featured_excerpt":"","featured_media_search_image":29487,"featured_media_search_card_image":30584,"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-pt\/wp-json\/wp\/v2\/stories\/42043","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/unlocked.microsoft.com\/pt-pt\/wp-json\/wp\/v2\/stories"}],"about":[{"href":"https:\/\/unlocked.microsoft.com\/pt-pt\/wp-json\/wp\/v2\/types\/stories"}],"wp:attachment":[{"href":"https:\/\/unlocked.microsoft.com\/pt-pt\/wp-json\/wp\/v2\/media?parent=42043"}],"wp:term":[{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/unlocked.microsoft.com\/pt-pt\/wp-json\/wp\/v2\/tags?post=42043"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}