{"id":791,"date":"2022-02-24T18:21:19","date_gmt":"2022-02-24T18:21:19","guid":{"rendered":"https:\/\/sleepconsort.wpengine.com\/?page_id=791"},"modified":"2022-04-13T18:29:32","modified_gmt":"2022-04-13T18:29:32","slug":"core-values","status":"publish","type":"page","link":"https:\/\/sleepconsortium.org\/fr\/core-values\/","title":{"rendered":"Valeurs fondamentales"},"content":{"rendered":"
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Valeurs fondamentales<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Au Sleep Consortium, nos principes fondateurs sont bas\u00e9s sur :<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Fonds propres <\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Notre approche de l'\u00e9quit\u00e9 se concentre sur l'inclusion de toutes les populations sous-repr\u00e9sent\u00e9es et non atteintes \u00e0 l'\u00e9chelle mondiale, dans de multiples domaines pathologiques et dans toutes les couches de la soci\u00e9t\u00e9. Gr\u00e2ce \u00e0 notre exp\u00e9rience personnelle et professionnelle, nous savons \u00e0 quel point il est urgent d'aborder les parcours diagnostiques complexes et l'acc\u00e8s aux soins de sant\u00e9 et aux m\u00e9dicaments appropri\u00e9s, de se battre avec les compagnies d'assurance et de fournir des soins optimaux \u00e0 nos proches - que chacun, quel que soit son \u00e2ge, son sexe, son identit\u00e9 ou son statut socio-\u00e9conomique, ait le droit \u00e0 un diagnostic rapide et \u00e0 un choix de modalit\u00e9s de traitement optimales.\u00a0<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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La lutte contre l'incongruit\u00e9 en mati\u00e8re de handicap, de culture, de revenu, de discordance linguistique et d'acc\u00e8s d\u00e9favoris\u00e9 aux soins de sant\u00e9 est au c\u0153ur de notre mission.<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Le Consortium du sommeil vise \u00e0 renforcer l'\u00e9quit\u00e9, \u00e0 favoriser l'inclusion, \u00e0 pratiquer un partage \u00e9thique des donn\u00e9es, \u00e0 maintenir le patient au centre des pr\u00e9occupations, \u00e0 all\u00e9ger le fardeau des familles et \u00e0 mettre en \u0153uvre des collaborations productives en faisant preuve d'urgence, d'ing\u00e9niosit\u00e9 et en reconnaissant l'impact de la maladie sur les relations interpersonnelles, l'\u00e9conomie et la sant\u00e9 mentale et \u00e9motionnelle. Dans le cadre du Consortium, tous les partenaires et collaborateurs avec lesquels nous nous engageons s'alignent sur cette conviction fondamentale gr\u00e2ce \u00e0 notre vision commune avec RARE-X.\u00a0<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Accessibilit\u00e9 <\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Nous pensons que pour acc\u00e9l\u00e9rer la compr\u00e9hension des troubles centraux de l'hypersomnolence, il faut offrir un acc\u00e8s \u00e9tendu aux patients, aux cliniciens, aux chercheurs, aux institutions de recherche et aux partenaires de l'industrie. Les donn\u00e9es provenant des registres et r\u00e9f\u00e9rentiels existants et les nouvelles donn\u00e9es t\u00e9l\u00e9charg\u00e9es sur le portail seront collect\u00e9es, connect\u00e9es et partag\u00e9es en fonction des pr\u00e9f\u00e9rences des patients. En ce sens, les donn\u00e9es partag\u00e9es seront soumises \u00e0 des barri\u00e8res, en fonction du consentement du patient et des parties prenantes. Les patients conservent les droits exclusifs sur leurs donn\u00e9es, peuvent les retirer du portail \u00e0 tout moment et recevront un retour d'information actualis\u00e9 au sein de la communaut\u00e9 des chercheurs et seront avertis des essais cliniques \u00e0 venir et des nouvelles th\u00e9rapies.\u00a0<\/p>

Les donn\u00e9es fournies par les patients via le portail ne sont ni achet\u00e9es, ni \u00e9chang\u00e9es, ni d\u00e9tenues par Sleep Consortium ou toute autre organisation affili\u00e9e.\u00a0<\/strong><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Collaboration <\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t
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En tant que consortium, nous facilitons la mise en place de diverses plateformes qui favorisent la collaboration interne et externe entre les diff\u00e9rentes parties prenantes. Cela se traduit par notre engagement aupr\u00e8s des groupes de d\u00e9fense des patients, au sein de notre conseil consultatif d'entreprise, et par notre soutien aux organisations actives dans le domaine des maladies rares et non rares, au niveau national et f\u00e9d\u00e9ral. Nous consid\u00e9rons notre r\u00f4le comme celui d'un connecteur, non seulement de donn\u00e9es, mais aussi d'individus, de communaut\u00e9s et de pays.\u00a0<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Adaptabilit\u00e9<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Dans ce monde d'incertitude, nous identifions le besoin de rester conscients et sensibles \u00e0 l'\u00e9volution globale, locale et individuelle. Le fait de disposer d'une infrastructure s\u00fbre au Sleep Consortium et d'une \u00e9quipe, d'un conseil d'administration et de partenaires scientifiques de premier ordre permet de s'adapter et, le cas \u00e9ch\u00e9ant, de se r\u00e9orienter. La cr\u00e9ation d'une nouvelle plateforme de collecte de donn\u00e9es pour les personnes souffrant de troubles du sommeil n\u00e9cessite de l'attention, de la flexibilit\u00e9 et la reconnaissance des d\u00e9fis et des changements auxquels nous sommes tous confront\u00e9s. L'\u00e9quipe de direction comprend qu'il n'y a pas de perc\u00e9e m\u00e9dicale sans changement et que le pouvoir d'\u00e9couter, de questionner, de chercher \u00e0 comprendre et de pivoter \u00e0 la lumi\u00e8re de nouvelles informations est la base du progr\u00e8s humain.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Core Values At Sleep Consortium, our founding principles are based on: Equity Our approach to equity focuses on inclusion of all under-represented and un-reached populations globally, across multiple disease spaces, and in every pocket of society. From personal and professional experience, we know how urgent the need is to address complex diagnostic journeys and access […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"inline_featured_image":false,"site-sidebar-layout":"no-sidebar","site-content-layout":"page-builder","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":"disabled","ast-breadcrumbs-content":"","ast-featured-img":"disabled","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":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center 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