{"id":12050,"date":"2025-03-17T18:29:00","date_gmt":"2025-03-17T18:29:00","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=12050"},"modified":"2025-05-05T17:02:50","modified_gmt":"2025-05-05T17:02:50","slug":"etude-de-fatigue","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2025\/03\/17\/fatigue-study\/","title":{"rendered":"Nouvelle \u00e9tude sur la fatigue chez les survivants du craniopharyngiome"},"content":{"rendered":"<h2 class=\"wp-block-heading\">La Raymond A. Wood Foundation et Rhythm Pharmaceuticals s'associent pour \u00e9tudier la fatigue chez les survivants d'un craniopharyngiome<\/h2>\n\n\n\n<p>La fatigue est l'un des sympt\u00f4mes les plus difficiles et les moins bien compris dont souffrent les survivants du craniopharyngiome et d'autres tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires. Dans le cadre de son engagement \u00e0 am\u00e9liorer la qualit\u00e9 de vie des survivants, la Fondation Raymond A. Wood est fi\u00e8re d'annoncer une nouvelle collaboration de recherche avec Rhythm Pharmaceuticals pour \u00e9tudier l'impact de la fatigue dans cette population de patients.<\/p>\n\n\n\n<p>Cette \u00e9tude sera men\u00e9e par le biais de notre registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires, qui recueille des donn\u00e9es directement aupr\u00e8s des patients et des soignants afin de mieux comprendre les effets \u00e0 long terme de ces tumeurs rares.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">L'importance de cette \u00e9tude<\/h3>\n\n\n\n<p>Les survivants d'un craniopharyngiome ressentent souvent une grande fatigue, qui peut avoir un impact significatif sur leur vie quotidienne. La fatigue peut \u00eatre influenc\u00e9e par des facteurs tels que la prise de poids, la perturbation des habitudes de sommeil et le dysfonctionnement hypothalamique, mais peu de recherches ont \u00e9t\u00e9 men\u00e9es pour en comprendre les causes et les traitements potentiels.<\/p>\n\n\n\n<p>David Meeker, M.D., pr\u00e9sident du conseil d'administration, directeur g\u00e9n\u00e9ral et pr\u00e9sident de Rhythm Pharmaceuticals, a soulign\u00e9 l'importance des donn\u00e9es rapport\u00e9es par les patients pour faire progresser les soins aux survivants :<\/p>\n\n\n\n<p>\"Nous sommes ravis de nous associer \u00e0 la Raymond A. Wood Foundation dans le cadre de cette enqu\u00eate pour en savoir plus sur la fatigue et ses effets li\u00e9s aux craniopharyngiomes. Il est important d'apprendre directement des patients et des soignants pour faire progresser notre compr\u00e9hension des craniopharyngiomes et de la fatigue, ainsi que des cons\u00e9quences pour l'am\u00e9lioration des soins aux patients.\"<\/p>\n\n\n\n<p>En tant qu'organisation de d\u00e9fense des patients, nous reconnaissons que la fatigue est plus qu'un simple \u00e9tat de fatigue - c'est un sympt\u00f4me qui change la vie et qui peut affecter les fonctions cognitives, le bien-\u00eatre \u00e9motionnel et la capacit\u00e9 \u00e0 accomplir les activit\u00e9s quotidiennes.<\/p>\n\n\n\n<p>\"Nous sommes heureux de nous joindre \u00e0 Rhythm dans cet effort pour mieux comprendre les exp\u00e9riences des survivants du craniopharyngiome en mati\u00e8re de fatigue et les facteurs qui peuvent l'affecter, tels que la prise de poids et la somnolence diurne \", a d\u00e9clar\u00e9 Amy Wood, directrice ex\u00e9cutive de la Raymond A. Wood Foundation.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Qui peut participer ?<\/h3>\n\n\n\n<p>Tous <strong>survivants d'un craniopharyngiome<\/strong> ou <strong>leurs soignants<\/strong> peuvent participer \u00e0 cette \u00e9tude. Une carte-cadeau Visa $50 sera offerte \u00e0 ceux qui r\u00e9pondront aux enqu\u00eates.<\/p>\n\n\n\n<p>Si vous n'\u00eates pas encore inscrit au <strong>Registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires<\/strong>vous pouvez <strong>Inscrivez-vous d\u00e8s aujourd'hui<\/strong> et r\u00e9pondre \u00e0 l'enqu\u00eate.<\/p>\n\n\n\n<p>\ud83d\udd17 <strong>Rejoignez le registre ici :<\/strong> <a href=\"https:\/\/www.rawoodfoundation.org\/fr\/registre-des-tumeurs\/\">www.rawoodfoundation.org\/hptumorregistry<\/a><\/p>\n\n\n\n<p>Si vous faites d\u00e9j\u00e0 partie du registre, connectez-vous et r\u00e9pondez \u00e0 l'enqu\u00eate \u00e0 l'adresse suivante :<\/p>\n\n\n\n<p>\ud83d\udd17 <a href=\"https:\/\/hptumorregistry.iamrare.org\/\">https:\/\/hptumorregistry.iamrare.org\/<\/a><\/p>\n\n\n\n<p>Pour toute question relative \u00e0 l'\u00e9tude, veuillez contacter : <strong><a>registry@rawoodfoundation.org<\/a><\/strong>.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Faire progresser la recherche pour la communaut\u00e9 du craniopharyngiome<\/h3>\n\n\n\n<p>A l'occasion de la <strong>Fondation Raymond A. Wood<\/strong>Nous nous engageons \u00e0 <strong>combler le foss\u00e9 entre l'exp\u00e9rience des patients et la recherche scientifique<\/strong>. Cette collaboration avec Rhythm Pharmaceuticals est une \u00e9tape cruciale pour r\u00e9pondre aux besoins de l'industrie pharmaceutique. <strong>fatigue<\/strong>Le cancer du sein est l'un des probl\u00e8mes les plus d\u00e9bilitants et les plus n\u00e9glig\u00e9s auxquels sont confront\u00e9s les survivants d'un craniopharyngiome.<\/p>\n\n\n\n<p>Nous encourageons tous les patients et les soignants \u00e0 participer...<strong>votre voix compte pour fa\u00e7onner l'avenir des soins et de la recherche<\/strong>.<\/p>\n\n\n\n<p>Restez \u00e0 l'\u00e9coute pour des mises \u00e0 jour au fur et \u00e0 mesure que nous avan\u00e7ons dans cette importante \u00e9tude !<\/p>\n\n\n\n<figure class=\"gb-block-image gb-block-image-2df79cb1\"><img decoding=\"async\" width=\"1000\" height=\"1000\" class=\"gb-image gb-image-2df79cb1\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/03\/Rhythm-FatigueStudyGraphic.png\" alt=\"Image de l&#039;affiche\" title=\"Graphique de l&#039;\u00e9tude rythme-fatigue\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/03\/Rhythm-FatigueStudyGraphic.png 1000w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/03\/Rhythm-FatigueStudyGraphic-300x300.png 300w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/03\/Rhythm-FatigueStudyGraphic-150x150.png 150w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/03\/Rhythm-FatigueStudyGraphic-768x768.png 768w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/03\/Rhythm-FatigueStudyGraphic-12x12.png 12w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/03\/Rhythm-FatigueStudyGraphic-330x330.png 330w\" sizes=\"(max-width: 1000px) 100vw, 1000px\" \/><\/figure>","protected":false},"excerpt":{"rendered":"<p>La Raymond A. Wood Foundation et Rhythm Pharmaceuticals s'associent pour \u00e9tudier la fatigue chez les survivants du craniopharyngiome ... <a title=\"Nouvelle \u00e9tude sur la fatigue chez les survivants du craniopharyngiome\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/2025\/03\/17\/fatigue-study\/\" aria-label=\"En savoir plus sur une nouvelle \u00e9tude sur la fatigue chez les survivants d&#039;un craniopharyngiome\">Lire plus<\/a><\/p>","protected":false},"author":6,"featured_media":12052,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[20,1],"tags":[],"class_list":["post-12050","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-latest-research","category-uncategorized","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>New Study on Fatigue in Craniopharyngioma Survivors - Raymond A. 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