{"id":13197,"date":"2025-05-16T12:40:53","date_gmt":"2025-05-16T12:40:53","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=13197"},"modified":"2025-05-16T12:42:47","modified_gmt":"2025-05-16T12:42:47","slug":"anniversaire-du-registre","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2025\/05\/16\/registry-anniversary\/","title":{"rendered":"Un an. 350 voix. D'innombrables id\u00e9es."},"content":{"rendered":"<h2 class=\"wp-block-heading\">C\u00e9l\u00e9bration du premier anniversaire du registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires et du pouvoir de l'exp\u00e9rience partag\u00e9e pour susciter le changement.<\/h2>\n\n\n\n<p>Il y a un an, la Fondation Raymond A. Wood a lanc\u00e9 le Registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires avec une vision : rassembler les exp\u00e9riences v\u00e9cues par les patients et les soignants pour faire avancer la recherche, am\u00e9liorer les soins et, en fin de compte, changer des vies. Aujourd'hui, nous sommes fiers de partager le chemin parcouru - et le chemin que nous pouvons encore parcourir ensemble.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">En chiffres<\/h3>\n\n\n\n<p>En seulement 12 mois, pr\u00e8s de 350 personnes ont rejoint le registre, dont 310 personnes diagnostiqu\u00e9es avec un craniopharyngiome (CP). Il s'agit l\u00e0 d'un t\u00e9moignage incroyable du pouvoir de la communaut\u00e9 et d'un engagement commun en faveur de la science et de la d\u00e9fense des droits.<\/p>\n\n\n\n<p><strong>O\u00f9 vivent nos participants :<\/strong><br>Si 73% de nos participants au CP sont originaires des \u00c9tats-Unis, nous avons accueilli des membres de 22 autres pays, dont l'Argentine, le Br\u00e9sil, l'Australie, le Canada, l'\u00c9gypte, l'Europe, l'Asie et l'Am\u00e9rique du Sud. Cette repr\u00e9sentation mondiale souligne les d\u00e9fis universels de cette maladie rare et l'importance de l'action collective.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Ce que nous apprenons<\/h3>\n\n\n\n<p>Ce registre ne consiste pas seulement \u00e0 collecter des donn\u00e9es, mais aussi \u00e0 d\u00e9couvrir des informations susceptibles d'entra\u00eener des changements significatifs. Voici quelques-uns des enseignements essentiels tir\u00e9s de la premi\u00e8re ann\u00e9e :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>65% des participants au CP n'ont pas connu de r\u00e9cidive tumorale.<\/li>\n\n\n\n<li>49% ont re\u00e7u un diagnostic d'ob\u00e9sit\u00e9 hypothalamique (HO), ce qui correspond \u00e0 la litt\u00e9rature m\u00e9dicale existante. Cependant, 9% ne savent pas s'ils ont ce diagnostic, ce qui souligne la n\u00e9cessit\u00e9 d'une meilleure \u00e9ducation et d'une meilleure prise en charge.<\/li>\n\n\n\n<li>En moyenne, les patients d\u00e9clarent g\u00e9rer 14 probl\u00e8mes de sant\u00e9 apr\u00e8s le traitement, la fatigue \u00e9tant l'un des sympt\u00f4mes les plus perturbants apr\u00e8s l'hypopituitarisme.<\/li>\n<\/ul>\n\n\n\n<p><strong>L'impact sur les comportements alimentaires est profond :<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>78% a connu une prise de poids significative apr\u00e8s le traitement.<\/li>\n\n\n\n<li>52% a constat\u00e9 une forte augmentation de la faim imm\u00e9diatement apr\u00e8s le traitement.<\/li>\n\n\n\n<li>42% des patients atteints de PC ont adopt\u00e9 des comportements de recherche de nourriture tels que le vol de nourriture ou d'argent en raison d'une faim extr\u00eame.<\/li>\n\n\n\n<li>Chez les enfants, 12% ont \u00e9t\u00e9 signal\u00e9s comme mangeant des choses non comestibles ou de mauvais go\u00fbt pour essayer de satisfaire cette faim.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">\u00c9ducation et travail<\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li>42% des personnes atteintes de PC ont b\u00e9n\u00e9fici\u00e9 d'une \u00e9ducation sp\u00e9ciale ou d'un soutien \u00e0 l'\u00e9cole.<\/li>\n\n\n\n<li>11% sont titulaires d'une ma\u00eetrise et 7 ont obtenu un doctorat, ce qui t\u00e9moigne de la r\u00e9silience et de la d\u00e9termination de cette communaut\u00e9.<\/li>\n\n\n\n<li>Malgr\u00e9 des probl\u00e8mes de sant\u00e9 persistants, 33% travaillent \u00e0 temps plein ou \u00e0 temps partiel, red\u00e9finissant ainsi ce que signifie vivre avec une PC.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">Faire avancer la recherche<\/h3>\n\n\n\n<p>Au cours de l'ann\u00e9e \u00e9coul\u00e9e, le registre a soutenu ou lanc\u00e9 trois projets de recherche :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Comportements alimentaires dans la PC<\/li>\n\n\n\n<li>Priorit\u00e9s de traitement du point de vue du patient\/de l'aidant<\/li>\n\n\n\n<li>Fatigue en collaboration avec Rhythm Pharmaceuticals<\/li>\n<\/ul>\n\n\n\n<p>En outre, quatre groupes de recherche externes ont utilis\u00e9 le registre pour recruter des participants \u00e0 leurs essais ou \u00e9tudes cliniques - une d\u00e9monstration directe de la fa\u00e7on dont votre participation acc\u00e9l\u00e8re la recherche.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Merci de nous avoir rejoints<\/h3>\n\n\n\n<p>Merci \u00e0 ceux qui se sont inscrits. Votre voix, votre exp\u00e9rience et votre temps ont un impact qui va bien au-del\u00e0 de ce registre. Vous faites partie d'un mouvement qui vise \u00e0 transformer les soins prodigu\u00e9s \u00e0 une population qui, trop souvent, n'est pas entendue.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Vous n'\u00eates pas encore inscrit au registre ?<\/h3>\n\n\n\n<p>Si vous ou votre proche \u00eates atteint d'une tumeur c\u00e9r\u00e9brale hypothalamo-hypophysaire comme le craniopharyngiome, votre histoire est importante. Chaque donn\u00e9e nous aide \u00e0 brosser un tableau plus complet de la vie avec cette maladie - ce qui fonctionne dans le traitement, o\u00f9 le soutien fait d\u00e9faut, et comment nous pouvons cr\u00e9er un meilleur avenir pour tous.<\/p>\n\n\n\n<p><strong><a href=\"https:\/\/www.rawoodfoundation.org\/fr\/registre-des-tumeurs\/\">Rejoignez le registre aujourd'hui<\/a> et participer au prochain chapitre de la recherche et de la d\u00e9fense des maladies rares.<\/strong><\/p>\n\n\n\n<p>Ensemble, nous construisons quelque chose de puissant. Nous souhaitons une nouvelle ann\u00e9e de progr\u00e8s, de partenariat et de possibilit\u00e9s.<\/p>\n\n\n\n<p><\/p>","protected":false},"excerpt":{"rendered":"<p>C\u00e9l\u00e9bration du premier anniversaire du registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires - et du pouvoir du partage ... <a title=\"Un an. 350 voix. D&#039;innombrables id\u00e9es.\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/2025\/05\/16\/registry-anniversary\/\" aria-label=\"Plus d&#039;informations sur Un an. 350 voix. D&#039;innombrables points de vue.\">Lire plus<\/a><\/p>","protected":false},"author":6,"featured_media":13198,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[20,30],"tags":[],"class_list":["post-13197","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-latest-research","category-rawf-news","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>One Year. 350 Voices. Countless Insights. - Raymond A. 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