{"id":3933,"date":"2024-09-17T10:37:22","date_gmt":"2024-09-17T14:37:22","guid":{"rendered":"https:\/\/sleepconsortium.org\/?p=3933"},"modified":"2024-09-17T10:39:16","modified_gmt":"2024-09-17T14:39:16","slug":"voice-of-the-patient-report-documents-crucial-insights-into-living-with-idiopathic-hypersomnia","status":"publish","type":"post","link":"https:\/\/sleepconsortium.org\/pt\/news\/voice-of-the-patient-report-documents-crucial-insights-into-living-with-idiopathic-hypersomnia\/","title":{"rendered":"O relat\u00f3rio \"A Voz do Doente\" documenta informa\u00e7\u00f5es cruciais sobre como viver com Hipers\u00f3nia Idiop\u00e1tica"},"content":{"rendered":"<div data-elementor-type=\"wp-post\" data-elementor-id=\"3933\" class=\"elementor elementor-3933\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-f85cbc1 elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"f85cbc1\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-4ffb360\" data-id=\"4ffb360\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-cb2a0ef elementor-widget elementor-widget-heading\" data-id=\"cb2a0ef\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">O relat\u00f3rio \"A Voz do Doente\" documenta informa\u00e7\u00f5es cruciais sobre como viver com Hipers\u00f3nia Idiop\u00e1tica<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-c717c5c elementor-widget elementor-widget-heading\" data-id=\"c717c5c\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">O novo relat\u00f3rio ilustra as experi\u00eancias do mundo real e as necessidades de tratamento das pessoas com hipers\u00f3nia idiop\u00e1tica<\/h3>\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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-8f5f1a5 elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"8f5f1a5\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-2568678\" data-id=\"2568678\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-daf6e32 elementor-widget elementor-widget-text-editor\" data-id=\"daf6e32\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"p1\">West Palm Beach, Fl\u00f3rida, 17 de setembro de 2024 \/PRNewswire\/ - O Sleep Consortium, em parceria com uma coliga\u00e7\u00e3o de organiza\u00e7\u00f5es globais de defesa dos pacientes relacionados com o sono, anuncia com orgulho a publica\u00e7\u00e3o do <a href=\"https:\/\/sleepconsortium.org\/pt\/illuminate-hypersomnia\/\"><span class=\"s1\">Relat\u00f3rio \"Voice of the Patient\" (Voz do doente)<\/span><\/a> sobre hipers\u00f3nia idiop\u00e1tica (HI). Este documento fundamental, um produto da iniciativa Illuminate Hypersomnia, oferece uma vis\u00e3o abrangente das experi\u00eancias vividas e das aspira\u00e7\u00f5es de tratamento dos indiv\u00edduos com HI.<\/p><p class=\"p1\">O relat\u00f3rio \"Voice of the Patient\" (Voz do Doente) baseia-se em extensas reac\u00e7\u00f5es recolhidas atrav\u00e9s de uma reuni\u00e3o de desenvolvimento de medicamentos centrada no doente (EL-PFDD) conduzida externamente e realizada a 11 de abril de 2024, e num inqu\u00e9rito detalhado que obteve 811 respostas de pessoas que vivem em 21 pa\u00edses. Este relat\u00f3rio inovador tem como objetivo lan\u00e7ar luz sobre os desafios significativos enfrentados pelas pessoas que vivem com HI, fornecendo informa\u00e7\u00f5es valiosas para reguladores, criadores de produtos farmac\u00eauticos, investigadores, profissionais de sa\u00fade e decisores pol\u00edticos.<\/p><p class=\"p1\">A iniciativa Illuminate Hypersomnia foi concebida para amplificar as vozes dos indiv\u00edduos afectados pela hipers\u00f3nia. Ao explorar as suas narrativas pessoais, as estrat\u00e9gias de gest\u00e3o actuais e as necessidades de tratamento n\u00e3o satisfeitas, o relat\u00f3rio procura orientar a investiga\u00e7\u00e3o futura e o desenvolvimento de terapias. Foi um esfor\u00e7o paralelo \u00e0 iniciativa PFDD da U.S. Food and Drug Administration para recolher mais sistematicamente as perspectivas dos doentes sobre as suas doen\u00e7as e as terapias dispon\u00edveis para as tratar. O relat\u00f3rio da IH foi apresentado \u00e0 FDA para publica\u00e7\u00e3o na p\u00e1gina Web da ag\u00eancia de <span class=\"s1\">relat\u00f3rios de reuni\u00f5es espec\u00edficas sobre condi\u00e7\u00f5es<\/span>.<\/p><p class=\"p1\">\"Pela primeira vez, uma exposi\u00e7\u00e3o de 360 graus da experi\u00eancia vivida da IH \u00e9 retratada com honestidade e vulnerabilidade numa escala nunca antes vista, ouvida ou publicada\", afirmou Claire Wylds-Wright, co-fundadora e diretora de experi\u00eancia do Sleep Consortium. \"Este relat\u00f3rio oportuno \u00e9 inequ\u00edvoco na sua proclama\u00e7\u00e3o individual e colectiva de que viver durante anos com um diagn\u00f3stico e anos adicionais sem tratamento adequado para a HI pode causar estragos em todos os aspectos da vida de um indiv\u00edduo. Esta declara\u00e7\u00e3o da comunidade sobre o que \u00e9 viver com HI exige um apelo \u00e0 a\u00e7\u00e3o a que os respons\u00e1veis e as oportunidades devem responder em conformidade. Leiam este relat\u00f3rio, digiram-no, partilhem-no. E ajudem a libertar aqueles que foram suficientemente corajosos para nos dizerem o que precisam.\"<\/p><p class=\"p1\">As principais conclus\u00f5es do relat\u00f3rio destacam:<\/p><p class=\"p1\">- O conjunto de sintomas que impedem significativamente o funcionamento quotidiano, incluindo a carater\u00edstica da HI de sonol\u00eancia diurna \"irreprim\u00edvel\", qualidade de vig\u00edlia prejudicada e \"nevoeiro cerebral\" que persiste ao longo do dia.<\/p><p class=\"p1\">- As longas odisseias de diagn\u00f3stico s\u00e3o a norma, com o tempo entre o in\u00edcio dos sintomas e o diagn\u00f3stico a variar entre 0 e 67 anos, e uma m\u00e9dia de 14 anos de atraso no diagn\u00f3stico com base nas respostas aos inqu\u00e9ritos.<\/p><p class=\"p1\">- As limita\u00e7\u00f5es dos tratamentos actuais, mesmo quando utilizados em combina\u00e7\u00e3o, e a necessidade urgente de op\u00e7\u00f5es terap\u00eauticas mais eficazes. Sessenta por cento dos inquiridos indicaram que a HI n\u00e3o est\u00e1 controlada de todo ou est\u00e1 mal controlada.<\/p><p class=\"p1\">- O estigma e a descren\u00e7a na realidade da HI aumentam consideravelmente o fardo que as pessoas com HI experimentam; elas desejam urgentemente que acreditem nelas, que as levem a s\u00e9rio e que as tratem com mais respeito e dignidade.<\/p><p class=\"p1\">Espera-se que este relat\u00f3rio colorido de 80 p\u00e1ginas sirva como um recurso vital para avan\u00e7ar o di\u00e1logo sobre a HI e apoiar o desenvolvimento de terapias espec\u00edficas. Tamb\u00e9m refor\u00e7a o compromisso cont\u00ednuo do Sleep Consortium e dos seus parceiros, incluindo a Associa\u00e7\u00e3o Brasileira de Narcolepsia e Hipersonia Idiop\u00e1tica, a Damm Good Sleep, a Days4Naps, a European Narcolepsy Alliance for Patients, a Hypersomnia Alliance, a Hypersomnia Foundation, a Hypersomnolence Australia, a Hypersomnolence Support Network Japan, o Project Sleep e a PWN4PWN, para melhorar os resultados para as pessoas com HI.<\/p><p class=\"p1\">Para continuar o trabalho que esta iniciativa ajudou a galvanizar, a Hypersomnia Foundation ir\u00e1 organizar um <a href=\"https:\/\/www.hypersomniafoundation.org\/event\/beyondsleepyatlanta\/\"><span class=\"s1\">#BeyondSleepy confer\u00eancia por sat\u00e9lite<\/span><\/a> em Atlanta, a 19 de outubro de 2024, com um dia de programas e pontos de liga\u00e7\u00e3o para as pessoas que vivem com HI e outras perturba\u00e7\u00f5es do sono. Outros eventos educacionais e de investiga\u00e7\u00e3o est\u00e3o a ser planeados para manter a din\u00e2mica.<\/p><p class=\"p1\">As organiza\u00e7\u00f5es que apoiam generosamente a iniciativa Illuminate Hypersomnia com subs\u00eddios educacionais sem restri\u00e7\u00f5es s\u00e3o: Alkermes, Avadel Pharmaceuticals, Centessa Pharmaceuticals, Harmony Biosciences, Jazz Pharmaceuticals, Takeda e Zevra Therapeutics.<\/p><p class=\"p1\">Para mais informa\u00e7\u00f5es sobre o relat\u00f3rio \"Voice of the Patient\" e para aceder ao documento completo, visite <a href=\"https:\/\/bit.ly\/illuminate-IH\"><span class=\"s1\">https:\/\/bit.ly\/illuminate-IH<\/span><\/a>.<\/p><p class=\"p1\"><strong>**Sobre o Sleep Consortium**<\/strong><\/p><p class=\"p1\">O Cons\u00f3rcio do Sono \u00e9 uma organiza\u00e7\u00e3o sem fins lucrativos registada que se dedica a promover a investiga\u00e7\u00e3o, a compreens\u00e3o e o tratamento das perturba\u00e7\u00f5es centrais da hipersonol\u00eancia, incluindo a hipersonia idiop\u00e1tica. Atrav\u00e9s de esfor\u00e7os de colabora\u00e7\u00e3o e investiga\u00e7\u00e3o inovadora, o Cons\u00f3rcio visa melhorar a vida das pessoas afectadas por estas doen\u00e7as raras e dif\u00edceis.<\/p><p class=\"p1\"><strong>**CONTACTO COM OS MEIOS DE COMUNICA\u00c7\u00c3O SOCIAL:**<\/strong><\/p><p class=\"p1\">Lindsay Jesteadt, PhD\u00a0<\/p><p class=\"p1\">Cofundador e Diretor Executivo, Sleep Consortium\u00a0<\/p><p class=\"p1\">Correio eletr\u00f3nico: <a href=\"mailto:PFDD@sleepconsortium.org\">PFDD@sleepconsortium.org<\/a><\/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<\/div>","protected":false},"excerpt":{"rendered":"<p>O Sleep Consortium, em parceria com uma coliga\u00e7\u00e3o de organiza\u00e7\u00f5es globais de defesa dos doentes relacionados com o sono, tem o prazer de anunciar a publica\u00e7\u00e3o do relat\u00f3rio \"Voice of the Patient\" sobre hipers\u00f3nia idiop\u00e1tica (HI). <\/p>","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":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":"set","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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