{"id":11011,"date":"2020-03-02T17:50:24","date_gmt":"2020-03-02T17:50:24","guid":{"rendered":"http:\/\/drupal.test\/projects\/trousse-doutils-strategiques-tous-pour-un\/"},"modified":"2020-03-02T17:50:24","modified_gmt":"2020-03-02T17:50:24","slug":"trousse-doutils-strategiques-tous-pour-un","status":"publish","type":"project","link":"https:\/\/genomecanada.ca\/fr\/project\/trousse-doutils-strategiques-tous-pour-un\/","title":{"rendered":"Trousse d\u2019outils strat\u00e9giques Tous pour un"},"content":{"rendered":"<p>Comme il n\u2019y a pas suffisamment de patients atteints de maladies rares (MR) regroup\u00e9s en un seul et m\u00eame endroit, les donn\u00e9es doivent \u00eatre centralis\u00e9es, int\u00e9gr\u00e9es et largement accessibles pour stimuler la recherche en MR permettant d\u2019en identifier et d\u2019en comprendre les g\u00e8nes. Pour ce faire, une trousse d\u2019outils strat\u00e9giques g\u00e9n\u00e9rale, pratique et fond\u00e9e sur l\u2019\u00e9thique comprendra un cadre de gouvernance des donn\u00e9es en mati\u00e8re de consentement clinique et de partage des donn\u00e9es g\u00e9nomiques au Canada. Le projet est financ\u00e9 dans le cadre de l\u2019initiative Tous pour un&nbsp;qui a pour but d\u2019am\u00e9liorer la sant\u00e9 et le bien-\u00eatre des Canadiennes et des Canadiens atteints de maladies g\u00e9n\u00e9tiques graves en leur donnant acc\u00e8s \u00e0 des diagnostics exacts et opportuns, bas\u00e9s sur la g\u00e9nomique. Les patients tireront profit de l\u2019initiative Tous pour un tout en aidant d\u2019autres personnes parce qu\u2019ils partageront leurs donn\u00e9es cliniques et g\u00e9nomiques, dans le contexte d\u2019un syst\u00e8me de sant\u00e9 \u00e0 apprentissage. L\u2019initiative jette les bases d\u2019une m\u00e9decine de pr\u00e9cision au Canada.<\/p>\n<p>L\u2019\u00e9laboration des outils strat\u00e9giques de ce projet exigera une approche en trois volets&nbsp;: 1) l\u2019\u00e9valuation de l\u2019\u00e9cosyst\u00e8me strat\u00e9gique des maladies rares afin de cerner les points communs, les diff\u00e9rences et les limites du partage interprovincial des donn\u00e9es; 2) des activit\u00e9s de recherche de consensus afin de d\u00e9terminer les besoins strat\u00e9giques du milieu de la recherche sur les maladies rares; et 3) l\u2019\u00e9laboration d\u2019un cadre global de gouvernance. Les ressources qui en d\u00e9couleront visent \u00e0 \u00eatre interexploitables et normalis\u00e9es pour r\u00e9pondre aux besoins des diff\u00e9rents sites cliniques et de recherche, aux fins d\u2019approbation et d\u2019utilisation lors de la mise en \u0153uvre clinique, ainsi que dans les sites \u00e0 venir.<\/p>\n<hr \/>\n<p><strong>Volet de l\u2019initiative <a href=\"\/fr\/une-strategie-des-soins-de-sante-de-precision-pour-le-canada-voir-grand-commencer-petit-apprendre#touspourun\">Tous pour un<\/a>&nbsp;de G\u00e9nome Canada.<\/strong> Le cadre appuiera les projets et les \u00e9tablissements reli\u00e9s qui participent \u00e0 l\u2019initiative Tous pour un&nbsp;et permettra des partenariats avec d\u2019autres initiatives nationales. Bien qu\u2019adapt\u00e9s au milieu de la recherche clinique sur les maladies rares, les outils strat\u00e9giques d\u00e9velopp\u00e9s dans le cadre de l\u2019initiative Tous pour un&nbsp;peuvent \u00eatre adapt\u00e9s et utilis\u00e9s comme mod\u00e8les pour des maladies plus courantes, \u00e0 mesure que la m\u00e9decine de pr\u00e9cision progresse.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Comme il n\u2019y a pas suffisamment de patients atteints de maladies rares (MR) regroup\u00e9s en un seul et m\u00eame endroit, les donn\u00e9es doivent \u00eatre centralis\u00e9es, int\u00e9gr\u00e9es et largement accessibles pour stimuler la recherche en MR permettant d\u2019en identifier et d\u2019en comprendre les g\u00e8nes. Pour ce faire, une trousse d\u2019outils strat\u00e9giques g\u00e9n\u00e9rale, pratique et fond\u00e9e sur [&hellip;]<\/p>\n","protected":false},"featured_media":0,"template":"","meta":{"_acf_changed":false,"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}}},"project-categories":[92],"genome-competitions":[],"project-sector":[],"genome_centres":[104],"class_list":["post-11011","project","type-project","status-publish","hentry","project-categories-translation-fr","genome_centres-genome-quebec-fr"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Trousse d\u2019outils strat\u00e9giques Tous pour un - GenomeCanada<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/genomecanada.ca\/fr\/project\/trousse-doutils-strategiques-tous-pour-un\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Trousse d\u2019outils strat\u00e9giques Tous pour un - GenomeCanada\" \/>\n<meta property=\"og:description\" content=\"Comme il n\u2019y a pas suffisamment de patients atteints de maladies rares (MR) regroup\u00e9s en un seul et m\u00eame endroit, les donn\u00e9es doivent \u00eatre centralis\u00e9es, int\u00e9gr\u00e9es et largement accessibles pour stimuler la recherche en MR permettant d\u2019en identifier et d\u2019en comprendre les g\u00e8nes. 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