{"id":19157,"date":"2026-03-19T10:00:00","date_gmt":"2026-03-19T10:00:00","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=19157"},"modified":"2026-03-19T20:52:52","modified_gmt":"2026-03-19T20:52:52","slug":"les-priorites-de-traitement-dans-le-craniopharyngiome","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2026\/03\/19\/treatment-priorities-in-craniopharyngioma\/","title":{"rendered":"Priorit\u00e9s de traitement pour le craniopharyngiome : Perspectives des survivants et des soignants\u00a0"},"content":{"rendered":"<h2 class=\"wp-block-heading\">RAWF annonce la publication de la premi\u00e8re \u00e9tude men\u00e9e dans le registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires.<\/h2>\n\n\n\n<a class=\"gb-button gb-button-d4723be4 gb-button-text\" href=\"https:\/\/www.mdpi.com\/2227-9059\/14\/3\/664\" target=\"_blank\" rel=\"noopener noreferrer\">VOIR LA PUBLICATION<\/a>\n\n\n\n<p>Bien que le craniopharyngiome (CP) soit consid\u00e9r\u00e9 comme une tumeur b\u00e9nigne, les suites de l'ablation et du traitement de la tumeur laissent les survivants et leurs familles face \u00e0 de nombreux probl\u00e8mes de sant\u00e9. Si ces probl\u00e8mes sont bien connus des m\u00e9decins, on sait moins quels sont ceux que les survivants et leurs familles consid\u00e8rent comme les plus importants \u00e0 r\u00e9soudre.<\/p>\n\n\n\n<p>Gr\u00e2ce \u00e0 la participation de la communaut\u00e9 \u00e0 la <a href=\"https:\/\/www.rawoodfoundation.org\/fr\/registre-des-tumeurs\/\">Registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires<\/a>Dans le cadre de l'\u00e9tude sur la sant\u00e9 des enfants atteints de la maladie de Parkinson, lanc\u00e9e en mai 2024, l'\u00e9quipe de recherche de la Fondation Raymond A. Wood a pu recueillir et analyser les donn\u00e9es de 161 personnes, \u00e0 la fois des adultes ayant surv\u00e9cu \u00e0 la maladie et des soignants, principalement des parents d'enfants atteints de la maladie de Parkinson. Les participants ont partag\u00e9 leur point de vue sur les probl\u00e8mes de sant\u00e9 qui leur tiennent le plus \u00e0 c\u0153ur, en particulier ceux qui affectent la vie quotidienne et les objectifs \u00e0 long terme, ainsi que sur les questions qui, esp\u00e8rent-ils, feront l'objet de nouveaux traitements.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Quelles sont les principales conclusions ?<\/strong><\/h3>\n\n\n\n<p>La majorit\u00e9 des participants \u00e0 l'\u00e9tude ont identifi\u00e9 17 probl\u00e8mes de sant\u00e9 principaux, dont des probl\u00e8mes li\u00e9s au dysfonctionnement de l'hypothalamus du cerveau, des probl\u00e8mes neurologiques et des troubles de la vue. Le dysfonctionnement de l'hypothalamus couvre des probl\u00e8mes tels que la difficult\u00e9 \u00e0 contr\u00f4ler la temp\u00e9rature corporelle, les troubles du sommeil, l'ob\u00e9sit\u00e9, l'hyperphagie, la cognition et les comportements. Il est int\u00e9ressant de noter que les probl\u00e8mes de sant\u00e9 les plus importants ne sont pas toujours ceux qui surviennent le plus souvent. <\/p>\n\n\n\n<p>Ces 17 d\u00e9fis ont surtout affect\u00e9 les activit\u00e9s quotidiennes des survivants, et certains d'entre eux - comme les changements de comportement social - ont \u00e9galement rendu plus difficile l'atteinte des objectifs \u00e0 long terme des survivants. Les survivants et les soignants \u00e9taient g\u00e9n\u00e9ralement d'accord sur les probl\u00e8mes de sant\u00e9 les plus importants. La principale diff\u00e9rence est que les survivants adultes sont plus affect\u00e9s par la soif extr\u00eame (polydipsie). Pour les survivants adultes, la fatigue et les probl\u00e8mes de sommeil figuraient parmi les quatre probl\u00e8mes les plus graves ayant un impact sur la vie quotidienne. Pour les aidants, les changements rapides et souvent impr\u00e9visibles de l'humeur ou des \u00e9motions (labilit\u00e9 \u00e9motionnelle) et les probl\u00e8mes cognitifs \u00e9taient les plus importants pour les personnes dont ils s'occupaient. Presque tous ces probl\u00e8mes de sant\u00e9 - \u00e0 l'exception des probl\u00e8mes de contr\u00f4le de la temp\u00e9rature - ont \u00e9t\u00e9 choisis comme priorit\u00e9s principales pour de nouveaux traitements par les deux groupes. <\/p>\n\n\n\n<p>Les survivants adultes accordent une importance particuli\u00e8re \u00e0 la mise au point de traitements contre la fatigue et la somnolence diurne excessive, tandis que les soignants accordent une importance particuli\u00e8re aux nouveaux traitements contre l'ob\u00e9sit\u00e9.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>En quoi cette \u00e9tude fait-elle la diff\u00e9rence dans la vie de la communaut\u00e9 CP ?<\/strong><\/h3>\n\n\n\n<p>La collecte et l'int\u00e9gration des points de vue, des valeurs et des pr\u00e9f\u00e9rences des patients ou de leurs soignants concernant leur \u00e9tat de sant\u00e9 dans le d\u00e9veloppement de nouveaux traitements sont devenues une priorit\u00e9 pour la Food and Drug Administration (FDA), d'autres organismes de r\u00e9glementation et les assureurs de sant\u00e9. <\/p>\n\n\n\n<p>Les r\u00e9sultats de cette \u00e9tude aideront les m\u00e9decins \u00e0 fournir de meilleurs soins et un meilleur soutien aux familles, tout en aidant les chercheurs, les d\u00e9veloppeurs de m\u00e9dicaments, les organismes de r\u00e9glementation et les payeurs \u00e0 mieux comprendre ce qui compte le plus pour les patients, et \u00e0 orienter le d\u00e9veloppement de nouveaux traitements qui r\u00e9pondent r\u00e9ellement aux besoins des personnes vivant avec la PC.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Pour la communaut\u00e9 de la PC - comment vous pouvez contribuer \u00e0 faire avancer la recherche et le traitement de la PC :<\/strong><\/h3>\n\n\n\n<p>Si vous vous \u00eates d\u00e9j\u00e0 inscrit au registre des patients atteints de tumeurs hypothalamiques et hypophysaires, nous vous remercions. Votre voix a probablement contribu\u00e9 \u00e0 rendre cette \u00e9tude possible. En tant que survivant de la PC ou aidant, vous avez le pouvoir d'aider \u00e0 faire progresser la compr\u00e9hension de cette maladie rare en vous inscrivant au registre des patients. <\/p>\n\n\n\n<p>Lorsque vous partagez vos informations de sant\u00e9 et votre exp\u00e9rience, vous fournissez des donn\u00e9es pr\u00e9cieuses qui aident les chercheurs et les cliniciens \u00e0 mieux comprendre les effets \u00e0 long terme de la PC, \u00e0 identifier des mod\u00e8les de traitement et de r\u00e9sultats, et \u00e0 orienter les \u00e9tudes futures. <\/p>\n\n\n\n<p>Votre participation renforce la base de connaissances n\u00e9cessaire pour acc\u00e9l\u00e9rer la d\u00e9couverte scientifique, am\u00e9liorer les soins m\u00e9dicaux et, en fin de compte, am\u00e9liorer la qualit\u00e9 de vie pour vous et pour les futurs survivants.  En savoir plus et s'inscrire au registre <a href=\"https:\/\/www.rawoodfoundation.org\/fr\/registre-des-tumeurs\/\">ici<\/a>.<\/p>\n\n\n\n<p>En savoir plus sur l'\u00e9tude <a href=\"https:\/\/www.mdpi.com\/2227-9059\/14\/3\/664\">ici. <\/a><\/p>\n\n\n\n<p><\/p>","protected":false},"excerpt":{"rendered":"<p>RAWF annonce la publication de la premi\u00e8re \u00e9tude men\u00e9e dans le cadre des tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires ... <a title=\"Priorit\u00e9s de traitement pour le craniopharyngiome : Perspectives des survivants et des soignants\u00a0\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/2026\/03\/19\/treatment-priorities-in-craniopharyngioma\/\" aria-label=\"Read more about Treatment Priorities in Craniopharyngioma: Perspectives of Survivors and Caregivers\u00a0\">Lire plus<\/a><\/p>","protected":false},"author":8,"featured_media":19162,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[20],"tags":[],"class_list":["post-19157","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-latest-research","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>Treatment Priorities in Craniopharyngioma: Perspectives of Survivors and Caregivers\u00a0 - Raymond A. 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