{"id":3918,"date":"2024-05-14T10:15:00","date_gmt":"2024-05-14T14:15:00","guid":{"rendered":"https:\/\/sleepconsortium.org\/?p=3918"},"modified":"2024-09-17T10:35:49","modified_gmt":"2024-09-17T14:35:49","slug":"groundbreaking-data-collection-platform-opens","status":"publish","type":"post","link":"https:\/\/sleepconsortium.org\/pt\/news\/groundbreaking-data-collection-platform-opens\/","title":{"rendered":"Plataforma inovadora de recolha de dados aberta para acelerar a investiga\u00e7\u00e3o sobre as perturba\u00e7\u00f5es centrais da hipersonol\u00eancia.\u00a0"},"content":{"rendered":"
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Plataforma inovadora de recolha de dados aberta para acelerar a investiga\u00e7\u00e3o sobre as perturba\u00e7\u00f5es centrais da hipersonol\u00eancia. <\/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\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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WEST PALM BEACH, Fl\u00f3rida, 14 de maio de 2024 \/ O Sleep Consortium, em parceria com as principais organiza\u00e7\u00f5es de defesa de pacientes relacionados ao sono, a comunidade global de pacientes e as principais partes interessadas do setor, tem o prazer de anunciar o lan\u00e7amento da Plataforma de Coleta de Dados do Sono (DCP). Projetada para indiv\u00edduos e fam\u00edlias afetados por Dist\u00farbios Centrais de Hipersonol\u00eancia, a Sleep DCP est\u00e1 definida para revolucionar a pesquisa e melhorar a compreens\u00e3o dessas condi\u00e7\u00f5es, aproveitando a IA e o aprendizado de m\u00e1quina j\u00e1 habilitados pelo RARE-X - um programa de pesquisa da Global Genes.<\/p>

Em 29 de abril de 2024, o cons\u00f3rcio lan\u00e7ou a plataforma com um an\u00fancio multim\u00e9dia e um webinar, unindo a comunidade global do sono. Este evento apresentou as capacidades da plataforma e discutiu a forma como os dados detidos e controlados pelos doentes podem acelerar drasticamente a investiga\u00e7\u00e3o e o desenvolvimento de novos tratamentos. Os peritos do RARE-X e os principais l\u00edderes de opini\u00e3o da comunidade do sono fizeram uma visita virtual \u00e0 plataforma e salientaram o seu potencial para transcender os registos de investiga\u00e7\u00e3o tradicionais, ligando-a a dados sobre outras doen\u00e7as raras e n\u00e3o raras, alargando assim o \u00e2mbito do seu impacto.<\/p>

\"logo\"Lindsay Jesteadt, co-fundadora e CEO do Sleep Consortium, comentou: \"Esta plataforma incorpora o nosso compromisso de devolver o controlo dos dados \u00e0s pessoas mais afectadas. Ao dar aos pacientes a possibilidade de gerir e partilhar os seus pr\u00f3prios dados, n\u00e3o s\u00f3 promovemos uma maior autonomia, como tamb\u00e9m aceleramos o caminho para novas descobertas e terapias na medicina do sono.\"<\/p>

Fundado em 2021, o Sleep Consortium foi estabelecido com a miss\u00e3o de reduzir os atrasos no diagn\u00f3stico e identificar indiv\u00edduos n\u00e3o diagnosticados em v\u00e1rias \u00e1reas de doen\u00e7as, globalmente. Os parceiros fundadores do cons\u00f3rcio, incluindo organiza\u00e7\u00f5es de defesa do paciente e partes interessadas da ind\u00fastria, formaram uma rede colaborativa dedicada a desmantelar barreiras de pesquisa, quebrar silos de dados e capacitar os pacientes.<\/p>

Claire Wylds-Wright, co-fundadora e CXO do Sleep Consortium, partilhou a sua motiva\u00e7\u00e3o pessoal: \"Como m\u00e3e e cuidadora de um jovem com narcolepsia, h\u00e1 mais de uma d\u00e9cada que tenho consci\u00eancia da necessidade premente de a investiga\u00e7\u00e3o em medicina do sono colmatar o fosso entre as revistas acad\u00e9micas e o percurso do doente. O que \u00e9 particularmente empolgante na plataforma \u00e9 a forma como permite que os doentes se envolvam com a tecnologia mais recente, apoiada por um desejo antiquado de trabalho em equipa para fazer avan\u00e7ar a agenda da investiga\u00e7\u00e3o.\"<\/p>

Os inqu\u00e9ritos, question\u00e1rios e escalas da plataforma foram meticulosamente selecionados por investigadores especializados em sono e foram aprovados pelo IRB. Ser\u00e3o identificados novos doentes de diferentes \u00e1reas de doen\u00e7as raras e n\u00e3o raras, o que permitir\u00e1 um diagn\u00f3stico mais r\u00e1pido.<\/p>

O papel fundamental do sono na sa\u00fade, no bem-estar, no desempenho, no humor e na qualidade de vida est\u00e1 agora, mais do que nunca, a ser apreciado, resultando numa avalia\u00e7\u00e3o cient\u00edfica mais aprofundada para ser utilizado como uma ferramenta para melhores resultados individuais. O Sleep Consortium est\u00e1 a assumir a lideran\u00e7a, transformando o panorama cl\u00ednico e de investiga\u00e7\u00e3o, com dados pertencentes aos pacientes, para aumentar a compreens\u00e3o da doen\u00e7a e avan\u00e7ar para um futuro com mais op\u00e7\u00f5es de tratamento, fazendo assim avan\u00e7ar o nosso campo. <\/i>- Dra. Anne Marie Morse, Diretora de Neurologia Infantil e Medicina do Sono Pedi\u00e1trica, Geisinger, Janet Weis Children's Hospital e Consultora Cient\u00edfica do Cons\u00f3rcio do Sono.<\/p>

A plataforma de recolha de dados sobre o sono criar\u00e1 uma base de dados pessoal e colectiva de valor inestim\u00e1vel para investigadores, cl\u00ednicos, patrocinadores do desenvolvimento de medicamentos, entidades reguladoras e profissionais de sa\u00fade. O apoio inicial e cont\u00ednuo de grupos de defesa dos doentes, como a ABRANHI, Day4Naps, Hypersomnia Alliance, Hypersomnia Foundation, Hypersomnolence Australia, Hypersomnolence Support Network Japan, Project Sleep e PWN4PWN, tem sido crucial para o envolvimento da comunidade, promovendo rela\u00e7\u00f5es globais.<\/p>

\"A informa\u00e7\u00e3o \u00e9 poder, mas s\u00f3 se for acess\u00edvel. O portal do Sleep Consortium permite que os pacientes acedam aos seus dados e ditem o acesso aos seus dados. Esta capacita\u00e7\u00e3o atrav\u00e9s da propriedade beneficia o indiv\u00edduo e a investiga\u00e7\u00e3o.\" -<\/i>Matt Horsnell, defensor dos doentes<\/p>

O apoio \u00e0 plataforma de recolha de dados sobre o sono inclui tamb\u00e9m contribui\u00e7\u00f5es da Alkermes, Avadel Pharmaceuticals, Jazz Pharmaceuticals, Takeda Pharmaceuticals, Centessa Pharmaceuticals e Zevra Therapeutics.<\/p>

Como manter-se informado e participar<\/b><\/p>

Visitar: https:\/\/sleepconsortium.org\/contact\/<\/span><\/a><\/span> para receber actualiza\u00e7\u00f5es oportunas sobre a plataforma de recolha de dados do sono e sobre os pr\u00f3ximos eventos e oportunidades para impulsionar a investiga\u00e7\u00e3o na \u00e1rea da sa\u00fade do sono.<\/p>

Sobre o Sleep Consortium\u00a0
<\/b>O Sleep Consortium \u00e9 uma organiza\u00e7\u00e3o registada sem fins lucrativos (501(c)(3)) criada para acelerar a investiga\u00e7\u00e3o da pr\u00f3xima gera\u00e7\u00e3o, a compreens\u00e3o da doen\u00e7a e o desenvolvimento de terapias para as pessoas que vivem com Dist\u00farbios Centrais de Hipersonol\u00eancia (CDoH) prim\u00e1rios e secund\u00e1rios e doen\u00e7as relacionadas. Atrav\u00e9s de pr\u00e1ticas \u00e9ticas de partilha de dados, tirando partido da Intelig\u00eancia Artificial e da Aprendizagem Autom\u00e1tica, o Sleep Consortium est\u00e1 a reimaginar a recolha de dados.<\/p>

Para mais informa\u00e7\u00f5es, visitar www.sleepconsortium.org<\/span><\/a><\/p>

CONTACTO COM OS MEIOS DE COMUNICA\u00c7\u00c3O SOCIAL:
<\/b>Lindsay Jesteadt, PhD
Cofundador e Diretor Executivo, Sleep Consortium
Correio eletr\u00f3nico: info@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":"

O Sleep Consortium, em parceria com as principais organiza\u00e7\u00f5es de defesa dos doentes relacionados com o sono, a comunidade global de doentes e as principais partes interessadas do sector, tem o prazer de anunciar o lan\u00e7amento da Plataforma de Recolha de Dados do Sono (DCP).<\/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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