{"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\/fr\/news\/groundbreaking-data-collection-platform-opens\/","title":{"rendered":"Ouverture d'une plateforme de collecte de donn\u00e9es r\u00e9volutionnaire pour acc\u00e9l\u00e9rer la recherche sur les troubles centraux de l'hypersomnolence.\u00a0"},"content":{"rendered":"
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Ouverture d'une plateforme de collecte de donn\u00e9es r\u00e9volutionnaire pour acc\u00e9l\u00e9rer la recherche sur les troubles centraux de l'hypersomnolence. <\/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, Fla. 14 mai 2024 \/ Sleep Consortium, en partenariat avec les principales organisations de d\u00e9fense des patients li\u00e9s au sommeil, la communaut\u00e9 mondiale des patients et les principaux acteurs de l'industrie, est ravi d'annoncer le lancement de la plateforme de collecte de donn\u00e9es sur le sommeil (DCP). Con\u00e7ue pour les personnes et les familles touch\u00e9es par les troubles centraux de l'hypersomnolence, la DCP du sommeil est destin\u00e9e \u00e0 r\u00e9volutionner la recherche et \u00e0 am\u00e9liorer la compr\u00e9hension de ces conditions en tirant parti de l'IA et de l'apprentissage automatique d\u00e9j\u00e0 permis par RARE-X-un programme de recherche de Global Genes.<\/p>

Le 29 avril 2024, le consortium a lanc\u00e9 la plateforme avec une annonce multim\u00e9dia et un webinaire, r\u00e9unissant la communaut\u00e9 mondiale du sommeil. Cet \u00e9v\u00e9nement a permis de pr\u00e9senter les capacit\u00e9s de la plateforme et de discuter de la mani\u00e8re dont les donn\u00e9es d\u00e9tenues et contr\u00f4l\u00e9es par les patients pourraient acc\u00e9l\u00e9rer consid\u00e9rablement la recherche et le d\u00e9veloppement de nouveaux traitements. Des experts de RARE-X et des leaders d'opinion de la communaut\u00e9 du sommeil ont fait une visite virtuelle de la plateforme et ont soulign\u00e9 son potentiel \u00e0 transcender les registres de recherche traditionnels en reliant les donn\u00e9es sur d'autres maladies rares et non rares, \u00e9largissant ainsi la port\u00e9e de son impact.<\/p>

\"logo\"Lindsay Jesteadt, cofondateur et PDG de Sleep Consortium, a d\u00e9clar\u00e9 : \"Cette plateforme incarne notre engagement \u00e0 redonner le contr\u00f4le des donn\u00e9es aux personnes les plus concern\u00e9es. En permettant aux patients de g\u00e9rer et de partager leurs propres donn\u00e9es, nous favorisons non seulement une plus grande autonomie, mais nous acc\u00e9l\u00e9rons \u00e9galement la voie vers de nouvelles d\u00e9couvertes et th\u00e9rapies dans le domaine de la m\u00e9decine du sommeil.\"<\/p>

Fond\u00e9 en 2021, le Sleep Consortium a pour mission de r\u00e9duire les retards de diagnostic et d'identifier les personnes non diagnostiqu\u00e9es dans de nombreux domaines pathologiques, \u00e0 l'\u00e9chelle mondiale. Les partenaires fondateurs du consortium, y compris les organisations de d\u00e9fense des patients et les parties prenantes de l'industrie, ont form\u00e9 un r\u00e9seau de collaboration d\u00e9di\u00e9 au d\u00e9mant\u00e8lement des obstacles \u00e0 la recherche, \u00e0 l'\u00e9limination des silos de donn\u00e9es et \u00e0 l'autonomisation des patients.<\/p>

Claire Wylds-Wright, cofondatrice et directrice g\u00e9n\u00e9rale de Sleep Consortium, a fait part de sa motivation personnelle : \"En tant que parent et soignante d'une jeune personne atteinte de narcolepsie, je suis consciente depuis plus d'une d\u00e9cennie du besoin aigu de recherche en m\u00e9decine du sommeil pour combler le foss\u00e9 entre les revues acad\u00e9miques et le parcours du patient. Ce qui est particuli\u00e8rement int\u00e9ressant avec la plateforme, c'est la fa\u00e7on dont elle permet aux patients de s'engager avec la technologie la plus r\u00e9cente, soutenue par un vieux d\u00e9sir de travail d'\u00e9quipe pour faire avancer l'agenda de la recherche.\"<\/p>

Les enqu\u00eates, questionnaires et \u00e9chelles de la plateforme ont \u00e9t\u00e9 m\u00e9ticuleusement \u00e9labor\u00e9s par des experts en recherche sur le sommeil et ont \u00e9t\u00e9 approuv\u00e9s par l'IRB. De nouveaux patients atteints de diff\u00e9rentes maladies, rares ou non, seront identifi\u00e9s, ce qui permettra d'acc\u00e9l\u00e9rer le diagnostic.<\/p>

Le r\u00f4le essentiel du sommeil dans la sant\u00e9, le bien-\u00eatre, les performances, l'humeur et la qualit\u00e9 de vie est aujourd'hui plus que jamais appr\u00e9ci\u00e9, ce qui donne lieu \u00e0 une \u00e9valuation scientifique plus pouss\u00e9e afin d'\u00eatre utilis\u00e9 comme un outil permettant d'obtenir de meilleurs r\u00e9sultats individuels. Sleep Consortium prend les devants en transformant le paysage clinique et de recherche, avec des donn\u00e9es appartenant aux patients, afin d'am\u00e9liorer la compr\u00e9hension de la maladie, d'avancer vers un avenir avec plus d'options de traitement, faisant ainsi progresser notre domaine. <\/i>- Anne Marie Morse, directrice du service de neurologie infantile et de m\u00e9decine p\u00e9diatrique du sommeil, Geisinger, Janet Weis Children's Hospital et conseill\u00e8re scientifique du Sleep Consortium.<\/p>

La plateforme de collecte de donn\u00e9es sur le sommeil cr\u00e9era une base de donn\u00e9es personnelle et collective inestimable pour les chercheurs, les cliniciens, les promoteurs de d\u00e9veloppement de m\u00e9dicaments, les organismes de r\u00e9glementation et les professionnels de la sant\u00e9. Le soutien pr\u00e9coce et continu de groupes de d\u00e9fense des patients tels que ABRANHI, Day4Naps, Hypersomnia Alliance, Hypersomnia Foundation, Hypersomnolence Australia, Hypersomnolence Support Network Japan, Project Sleep et PWN4PWN a \u00e9t\u00e9 crucial pour l'engagement de la communaut\u00e9 et a favoris\u00e9 les relations mondiales.<\/p>

\"L'information est un pouvoir, mais seulement si elle est accessible. Le portail de Sleep Consortium permet aux patients d'acc\u00e9der \u00e0 leurs donn\u00e9es et de dicter l'acc\u00e8s \u00e0 leurs donn\u00e9es. Cette responsabilisation par le biais de la propri\u00e9t\u00e9 profite \u00e0 l'individu et \u00e0 la recherche\". -<\/i>Matt Horsnell, d\u00e9fenseur des patients<\/p>

Le soutien \u00e0 la plateforme de collecte de donn\u00e9es sur le sommeil comprend \u00e9galement des contributions d'Alkermes, d'Avadel Pharmaceuticals, de Jazz Pharmaceuticals, de Takeda Pharmaceuticals, de Centessa Pharmaceuticals et de Zevra Therapeutics.<\/p>

Comment rester inform\u00e9 et s'impliquer<\/b><\/p>

Visiter : https:\/\/sleepconsortium.org\/contact\/<\/span><\/a><\/span> pour recevoir des mises \u00e0 jour sur la plateforme de collecte de donn\u00e9es sur le sommeil, les \u00e9v\u00e9nements \u00e0 venir et les opportunit\u00e9s de stimuler la recherche sur la sant\u00e9 du sommeil.<\/p>

A propos de Sleep Consortium\u00a0
<\/b>Sleep Consortium est une organisation enregistr\u00e9e \u00e0 but non lucratif (501(c)(3)) cr\u00e9\u00e9e pour acc\u00e9l\u00e9rer la recherche de nouvelle g\u00e9n\u00e9ration, la compr\u00e9hension de la maladie et le d\u00e9veloppement de th\u00e9rapies pour ceux qui vivent avec des troubles centraux primaires et secondaires de l'hypersomnolence (CDoH) et des maladies connexes. Gr\u00e2ce \u00e0 des pratiques \u00e9thiques de partage des donn\u00e9es et \u00e0 l'exploitation de l'intelligence artificielle et de l'apprentissage automatique, Sleep Consortium r\u00e9imagine la collecte de donn\u00e9es.<\/p>

Pour plus d'informations, visitez le site www.sleepconsortium.org<\/span><\/a><\/p>

CONTACT M\u00c9DIA :
<\/b>Lindsay Jesteadt, PhD
Co-fondateur et PDG, Sleep Consortium
Courriel : 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":"

Sleep Consortium, en partenariat avec les principales organisations de d\u00e9fense des patients souffrant de troubles du sommeil, la communaut\u00e9 mondiale des patients et les principaux acteurs de l'industrie, est ravi d'annoncer le lancement de la plateforme de collecte de donn\u00e9es sur le sommeil (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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