{"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\/es\/news\/groundbreaking-data-collection-platform-opens\/","title":{"rendered":"Se abre una innovadora plataforma de recogida de datos para acelerar la investigaci\u00f3n de los trastornos centrales de la hipersomnolencia.\u00a0"},"content":{"rendered":"
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Se abre una innovadora plataforma de recogida de datos para acelerar la investigaci\u00f3n de los trastornos centrales de la hipersomnolencia. <\/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, Florida, 14 de mayo de 2024 \/ Sleep Consortium, en colaboraci\u00f3n con las principales organizaciones de defensa de los pacientes relacionados con el sue\u00f1o, la comunidad mundial de pacientes y las principales partes interesadas de la industria, se complace en anunciar el lanzamiento de la Plataforma de Recopilaci\u00f3n de Datos del Sue\u00f1o (DCP). Dise\u00f1ada para personas y familias afectadas por trastornos centrales de hipersomnolencia, la DCP del sue\u00f1o est\u00e1 destinada a revolucionar la investigaci\u00f3n y mejorar la comprensi\u00f3n de estas afecciones aprovechando la IA y el aprendizaje autom\u00e1tico ya habilitados por RARE-X, un programa de investigaci\u00f3n de Global Genes.<\/p>

El 29 de abril de 2024, el consorcio lanz\u00f3 la plataforma con un anuncio multimedia y un seminario web, uniendo a la comunidad mundial del sue\u00f1o. En este evento se mostraron las capacidades de la plataforma y se debati\u00f3 c\u00f3mo los datos controlados y propiedad de los pacientes podr\u00edan acelerar dr\u00e1sticamente la investigaci\u00f3n y el desarrollo de nuevos tratamientos. Expertos de RARE-X y l\u00edderes de opini\u00f3n clave de la comunidad del sue\u00f1o ofrecieron una visita virtual a la plataforma y destacaron su potencial para trascender los registros de investigaci\u00f3n tradicionales mediante la vinculaci\u00f3n con datos sobre otras enfermedades raras y no raras, ampliando as\u00ed el alcance de su impacto.<\/p>

\"logo\"Lindsay Jesteadt, cofundadora y consejera delegada de Sleep Consortium, se\u00f1al\u00f3: \"Esta plataforma encarna nuestro compromiso de devolver el control de los datos a los m\u00e1s afectados. Al capacitar a los pacientes para gestionar y compartir sus propios datos, no s\u00f3lo fomentamos una mayor autonom\u00eda, sino que tambi\u00e9n aceleramos el camino hacia nuevos descubrimientos y terapias en la medicina del sue\u00f1o.\"<\/p>

Fundado en 2021, Sleep Consortium se estableci\u00f3 con la misi\u00f3n de reducir los retrasos en el diagn\u00f3stico e identificar a las personas no diagnosticadas en m\u00faltiples \u00e1reas de enfermedades, a nivel mundial. Los socios fundadores del consorcio, incluidas las organizaciones de defensa de los pacientes y las partes interesadas de la industria, han formado una red de colaboraci\u00f3n dedicada a desmantelar las barreras de investigaci\u00f3n, romper los silos de datos y empoderar a los pacientes.<\/p>

Claire Wylds-Wright, cofundadora y directora ejecutiva de Sleep Consortium, comparti\u00f3 su motivaci\u00f3n personal: \"Como madre y cuidadora de un joven con narcolepsia, soy consciente desde hace m\u00e1s de una d\u00e9cada de la acuciante necesidad de que la investigaci\u00f3n en medicina del sue\u00f1o salve la distancia entre las publicaciones acad\u00e9micas y el recorrido del paciente. Lo que es particularmente emocionante de la plataforma es c\u00f3mo permite a los pacientes participar con la \u00faltima tecnolog\u00eda, respaldados por un deseo anticuado de trabajo en equipo para avanzar en la agenda de investigaci\u00f3n.\"<\/p>

Las encuestas, cuestionarios y escalas de la plataforma han sido meticulosamente seleccionados por expertos investigadores del sue\u00f1o y han sido aprobados por el IRB. Se identificar\u00e1n nuevos pacientes de diferentes \u00e1reas de enfermedades raras y no raras, lo que permitir\u00e1 un diagn\u00f3stico m\u00e1s r\u00e1pido.<\/p>

El papel fundamental del sue\u00f1o en la salud, el bienestar, el rendimiento, el estado de \u00e1nimo y la calidad de vida se aprecia ahora m\u00e1s que nunca, lo que da lugar a una mayor evaluaci\u00f3n cient\u00edfica que se utilizar\u00e1 como herramienta para obtener mejores resultados individuales. El Consorcio del Sue\u00f1o est\u00e1 tomando la iniciativa transformando el panorama cl\u00ednico y de investigaci\u00f3n, con datos propiedad de los pacientes, para aumentar la comprensi\u00f3n de la enfermedad, avanzar hacia un futuro con m\u00e1s opciones de tratamiento y, de este modo, hacer progresar nuestro campo. <\/i>- Dra. Anne Marie Morse, Directora de Neurolog\u00eda Infantil y Medicina Pedi\u00e1trica del Sue\u00f1o, Geisinger, Janet Weis Children's Hospital y Asesora Cient\u00edfica del Consorcio del Sue\u00f1o.<\/p>

La Plataforma de Recogida de Datos sobre el Sue\u00f1o crear\u00e1 una base de datos personal y colectiva de incalculable valor para investigadores, cl\u00ednicos, patrocinadores del desarrollo de f\u00e1rmacos, reguladores y profesionales sanitarios. El apoyo temprano y continuo de grupos de defensa de los pacientes como ABRANHI, Day4Naps, Hypersomnia Alliance, Hypersomnia Foundation, Hypersomnolence Australia, Hypersomnolence Support Network Japan, Project Sleep y PWN4PWN ha sido crucial para el compromiso de la comunidad, fomentando las relaciones globales.<\/p>

\"La informaci\u00f3n es poder, pero s\u00f3lo si es accesible. El portal del Consorcio del Sue\u00f1o permite a los pacientes acceder a sus datos y dictar el acceso a los mismos. Este empoderamiento a trav\u00e9s de la propiedad beneficia al individuo y a la investigaci\u00f3n\". -<\/i>Matt Horsnell, Defensor del Paciente<\/p>

La Plataforma de Recogida de Datos sobre el Sue\u00f1o tambi\u00e9n cuenta con el apoyo de Alkermes, Avadel Pharmaceuticals, Jazz Pharmaceuticals, Takeda Pharmaceuticals, Centessa Pharmaceuticals y Zevra Therapeutics.<\/p>

C\u00f3mo mantenerse informado y participar<\/b><\/p>

Visita: https:\/\/sleepconsortium.org\/contact\/<\/span><\/a><\/span> para recibir informaci\u00f3n actualizada sobre la plataforma de recopilaci\u00f3n de datos del sue\u00f1o y los pr\u00f3ximos eventos y oportunidades para impulsar la investigaci\u00f3n en salud del sue\u00f1o.<\/p>

Acerca del Consorcio del Sue\u00f1o\u00a0
<\/b>Sleep Consortium es una organizaci\u00f3n registrada sin \u00e1nimo de lucro (501(c)(3)) creada para acelerar la investigaci\u00f3n de pr\u00f3xima generaci\u00f3n, la comprensi\u00f3n de la enfermedad y el desarrollo de terapias para aquellos que viven con Trastornos Centrales de Hipersomnolencia (CDoH) primarios y secundarios y enfermedades relacionadas. A trav\u00e9s de pr\u00e1cticas \u00e9ticas de intercambio de datos, aprovechando la Inteligencia Artificial y el Aprendizaje Autom\u00e1tico, Sleep Consortium est\u00e1 reimaginando la recopilaci\u00f3n de datos.<\/p>

Para m\u00e1s informaci\u00f3n, visite www.sleepconsortium.org<\/span><\/a><\/p>

CONTACTO CON LOS MEDIOS DE COMUNICACI\u00d3N:
<\/b>Dra. Lindsay Jesteadt
Cofundadora y Directora General, Consorcio del Sue\u00f1o
Correo electr\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":"

El Consorcio del Sue\u00f1o, en colaboraci\u00f3n con las principales organizaciones de defensa de los pacientes relacionados con el sue\u00f1o, la comunidad mundial de pacientes y las principales partes interesadas de la industria, se complace en anunciar el lanzamiento de la Plataforma de Recogida de Datos del Sue\u00f1o (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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