{"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\/pt\/core-values\/","title":{"rendered":"Valores fundamentais"},"content":{"rendered":"
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Valores fundamentais<\/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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No Sleep Consortium, os nossos princ\u00edpios fundadores baseiam-se em:<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Patrim\u00f3nio <\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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A nossa abordagem \u00e0 equidade centra-se na inclus\u00e3o de todas as popula\u00e7\u00f5es sub-representadas e n\u00e3o alcan\u00e7adas a n\u00edvel global, em m\u00faltiplos espa\u00e7os de doen\u00e7a e em todos os sectores da sociedade. A partir da nossa experi\u00eancia pessoal e profissional, sabemos como \u00e9 urgente a necessidade de abordar percursos de diagn\u00f3stico complexos e o acesso a cuidados de sa\u00fade e medicamentos adequados, de lutar com as companhias de seguros e de prestar os melhores cuidados aos nossos entes queridos - para que todos, independentemente da idade, g\u00e9nero, identidade ou estatuto socioecon\u00f3mico, tenham direito a um diagn\u00f3stico r\u00e1pido e \u00e0 escolha das melhores modalidades de tratamento.\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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A abordagem da incongru\u00eancia em mat\u00e9ria de defici\u00eancia, cultura, rendimento, discord\u00e2ncia lingu\u00edstica e acesso desfavorecido aos cuidados de sa\u00fade est\u00e1 no cerne do que procuramos realizar.<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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O Sleep Consortium tem como objetivo elevar a equidade, liderar a inclus\u00e3o, praticar a partilha \u00e9tica de dados, manter a centralidade no paciente, aliviar a carga sobre as fam\u00edlias e implementar colabora\u00e7\u00f5es produtivas com urg\u00eancia, desenvoltura e reconhecimento do impacto da doen\u00e7a nas rela\u00e7\u00f5es interpessoais, na economia e na sa\u00fade mental e emocional. No \u00e2mbito dos Cons\u00f3rcios, todos os parceiros e colaboradores com quem nos envolvemos alinham-se com esta cren\u00e7a fundamental atrav\u00e9s da nossa vis\u00e3o partilhada com o 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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Acessibilidade <\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Acreditamos que o caminho para acelerar a compreens\u00e3o das Perturba\u00e7\u00f5es Centrais da Hipersonol\u00eancia se baseia na disponibiliza\u00e7\u00e3o de um acesso alargado a doentes, cl\u00ednicos, investigadores, institui\u00e7\u00f5es de investiga\u00e7\u00e3o e parceiros industriais. A recolha de dados de registos e reposit\u00f3rios existentes e os novos dados carregados no portal ser\u00e3o recolhidos, ligados e partilhados com base nas prefer\u00eancias dos doentes. Neste sentido, os dados partilhados ser\u00e3o bloqueados, de acordo com o consentimento dos doentes e das partes interessadas. Os doentes mant\u00eam os direitos exclusivos sobre os seus dados, podem retir\u00e1-los do portal a qualquer momento e receber\u00e3o feedback atualizado da comunidade de investiga\u00e7\u00e3o e ser\u00e3o alertados para os pr\u00f3ximos ensaios cl\u00ednicos e novas terapias.\u00a0<\/p>

Os dados fornecidos pelos pacientes atrav\u00e9s do portal n\u00e3o s\u00e3o adquiridos, comercializados ou propriedade do Sleep Consortium ou de quaisquer organiza\u00e7\u00f5es afiliadas.\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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Colabora\u00e7\u00e3o <\/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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Enquanto cons\u00f3rcio, facilitamos v\u00e1rias plataformas que promovem a colabora\u00e7\u00e3o interna e externa entre as v\u00e1rias partes interessadas. Este facto \u00e9 demonstrado no nosso envolvimento com grupos de defesa dos doentes, no nosso conselho consultivo empresarial e no nosso apoio a organiza\u00e7\u00f5es no espa\u00e7o das doen\u00e7as raras e n\u00e3o raras a n\u00edvel estatal e federal. Encaramos o nosso papel como conectores, n\u00e3o apenas de dados, mas de indiv\u00edduos, comunidades e pa\u00edses.\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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Adaptabilidade<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Neste mundo de incerteza, identificamos a necessidade de nos mantermos conscientes e sens\u00edveis \u00e0 evolu\u00e7\u00e3o global, local e individual. Ter uma infraestrutura segura no Sleep Consortium e uma equipa de primeira classe, um conselho de administra\u00e7\u00e3o e um conjunto de parceiros cient\u00edficos permite espa\u00e7o para adapta\u00e7\u00e3o e, quando necess\u00e1rio, reorienta\u00e7\u00e3o. O pioneirismo de uma nova plataforma de recolha de dados para pessoas afectadas por dist\u00farbios do sono implica a necessidade de aten\u00e7\u00e3o, flexibilidade e reconhecimento dos desafios e mudan\u00e7as com que todos nos confrontamos. A equipa executiva compreende que os avan\u00e7os m\u00e9dicos s\u00e3o imposs\u00edveis sem mudan\u00e7a e que o poder de ouvir, questionar, procurar compreender e mudar \u00e0 luz de novas informa\u00e7\u00f5es \u00e9 a base do progresso humano.<\/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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\n\t\t\t\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\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<\/div>","protected":false},"excerpt":{"rendered":"

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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