{"id":19433,"date":"2026-04-01T15:22:18","date_gmt":"2026-04-01T15:22:18","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=19433"},"modified":"2026-04-02T14:03:36","modified_gmt":"2026-04-02T14:03:36","slug":"mieux-comprendre-lhyperphagie-dans-la-cp","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2026\/04\/01\/advancing-understanding-of-hyperphagia-in-cp\/","title":{"rendered":"Mieux comprendre l'hyperphagie dans la PC"},"content":{"rendered":"<h2 class=\"wp-block-heading\"><strong>Une nouvelle \u00e9tude met en lumi\u00e8re l'hyperphagie dans le craniopharyngiome<\/strong><\/h2>\n\n\n\n<p>Nous sommes ravis de partager la publication de notre deuxi\u00e8me \u00e9tude de recherche du registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires, dirig\u00e9 par la Fondation Raymond A. Wood. Intitul\u00e9e <em>\"Hyperphagie dans le cas d'un craniopharyngiome : A Real-World Study : Une \u00e9tude en situation r\u00e9elle du registre international des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires\"<\/em>Il a \u00e9t\u00e9 publi\u00e9 dans la prestigieuse revue <em>Rapports scientifiques<\/em> et co\u00e9crit par Nathalie Kayadjanian, directrice scientifique, Eugenie Hsu et Dean Carson, membres du conseil d'administration, et Amy Wood, directrice ex\u00e9cutive.<\/p>\n\n\n\n<a class=\"gb-button gb-button-bc425a17 gb-button-text\" href=\"https:\/\/www.nature.com\/articles\/s41598-026-45789-3.epdf?sharing_token=mEpnCamYfi9NxVs2IHbbjdRgN0jAjWel9jnR3ZoTv0Oe0wdgranKOEPVOAPZeNfuRJfF7FbI6V-herx4yAl6vSzCD5IXKNBivRz7yGxLzJEVCrtbKKx9Wt-4FxZM7Cdd6KDyllnMopvadf1U5CnaxpsyTWsz3Wm5aZSD9e5R7PU%3D\" target=\"_blank\" rel=\"noopener noreferrer\">Voir la publication<\/a>\n\n\n\n<p><br>Gr\u00e2ce \u00e0 notre communaut\u00e9, nous avons analys\u00e9 les donn\u00e9es de 40 aidants de survivants de craniopharyngiomes (CP). Cette \u00e9tude nous aide \u00e0 mieux comprendre <strong>hyperphagie<\/strong>-Un \u00e9tat marqu\u00e9 par une faim extr\u00eame, une difficult\u00e9 \u00e0 se sentir rassasi\u00e9 et une recherche persistante de nourriture.<\/p>\n\n\n\n<p><strong>L'importance de cette \u00e9tude&nbsp;<\/strong><\/p>\n\n\n\n<p>L'hyperphagie touche plus de la moiti\u00e9 des personnes atteintes de PC et jusqu'\u00e0 70% des personnes souffrant d'ob\u00e9sit\u00e9 hypothalamique (HO), comme l'a montr\u00e9 notre \u00e9tude pr\u00e9c\u00e9dente <em><a href=\"https:\/\/www.rawoodfoundation.org\/fr\/etude-dimpact-sur-les-soignants\/\">Comprendre l'impact du craniopharyngiome sur les soignants et les survivants<\/a><\/em>. Elle peut r\u00e9duire consid\u00e9rablement la qualit\u00e9 de vie et faire peser un lourd fardeau sur les familles.<\/p>\n\n\n\n<p>Cette \u00e9tude vise \u00e0 mieux comprendre :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Comment les comportements alimentaires diff\u00e8rent-ils chez les personnes atteintes ou non d'HO ?<\/li>\n\n\n\n<li>Comment l'hyperphagie se manifeste-t-elle dans la PC ?<\/li>\n\n\n\n<li>Comment mesurer et identifier l'hyperphagie ?<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Ce que nous avons trouv\u00e9<\/strong><\/h3>\n\n\n\n<p>Nos r\u00e9sultats montrent que les comportements alimentaires dans la PC vont d'une hyperphagie normale \u00e0 une hyperphagie s\u00e9v\u00e8re, en particulier chez les survivants atteints d'HO.<\/p>\n\n\n\n<p>Par rapport aux survivants sans HO, les survivants avec HO :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Faire face \u00e0 des probl\u00e8mes de sant\u00e9 suppl\u00e9mentaires li\u00e9s au dysfonctionnement hypothalamique appel\u00e9 syndrome hypothalamique (fatigue, perturbation de l'horloge biologique, probl\u00e8mes \u00e9motionnels, cognitifs et comportementaux).<\/li>\n\n\n\n<li>La faim est plus intense et la sensation de sati\u00e9t\u00e9 moins grande<\/li>\n\n\n\n<li>Penser constamment \u00e0 la nourriture et \u00eatre accapar\u00e9 par des pens\u00e9es alimentaires<\/li>\n\n\n\n<li>ont des r\u00e9actions \u00e9motionnelles et comportementales plus fortes face \u00e0 la faim<\/li>\n<\/ul>\n\n\n\n<p>Dans certains cas, les soignants ont signal\u00e9 des comportements tels que l'ingestion de produits non alimentaires (pica), similaires \u00e0 ceux observ\u00e9s dans le syndrome de Prader-Willi.<\/p>\n\n\n\n<p>Nous avons constat\u00e9 que les aidants des survivants de l'HO utilisaient diverses strat\u00e9gies pour contr\u00f4ler l'environnement alimentaire.<\/p>\n\n\n\n<p>Enfin, nos r\u00e9sultats ont montr\u00e9 que les scores de gravit\u00e9 de l'hyperphagie chez les survivants de la PC atteints d'HO atteignent des niveaux comparables \u00e0 ceux du syndrome de Prader-Willi, ce qui souligne la gravit\u00e9 de l'hyperphagie chez les survivants de la PC atteints d'HO.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Une id\u00e9e simple mais puissante<\/strong><\/h3>\n\n\n\n<p>Un \u00e9l\u00e9ment cl\u00e9 \u00e0 retenir : l'identification de l'hyperphagie est d\u00e9licate en raison de la complexit\u00e9 du comportement qui n'est pas facilement observable dans le cabinet d'un m\u00e9decin et de la stigmatisation associ\u00e9e aux comportements alimentaires et \u00e0 la recherche de nourriture. Notre \u00e9tude a montr\u00e9 que le simple fait de demander. <strong><em>Combien de temps par jour les survivants sont-ils pr\u00e9occup\u00e9s par des pens\u00e9es alimentaires, sur une \u00e9chelle de 0 \u00e0 10, o\u00f9 0 correspond \u00e0 aucun moment et 10 \u00e0 tout le temps ?<\/em><\/strong>&nbsp;(\"pr\u00e9occupation alimentaire\") pourrait \u00eatre un moyen simple et efficace de d\u00e9pister l'hyperphagie en milieu clinique, ce qui pourrait aider les m\u00e9decins \u00e0 identifier plus facilement cette pathologie lors des visites de routine.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Pourquoi cela change-t-il les soins aux patients ?<\/strong><\/h3>\n\n\n\n<p>L'hyperphagie est un besoin critique non satisfait, complexe et souvent difficile \u00e0 diagnostiquer lors d'un bref rendez-vous m\u00e9dical. Cette \u00e9tude :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Met en \u00e9vidence les outils pratiques pour mesurer l'hyperphagie<\/li>\n\n\n\n<li>Permet d'orienter les futurs essais cliniques et le d\u00e9veloppement des traitements<\/li>\n\n\n\n<li>Permet un diagnostic plus pr\u00e9cis et de meilleurs soins aux patients<\/li>\n<\/ul>\n\n\n\n<p>En fin de compte, cela nous rapproche des traitements qui r\u00e9pondent r\u00e9ellement aux besoins des personnes atteintes de la maladie de Creutzfeldt-Jakob.<\/p>\n\n\n\n<a class=\"gb-button gb-button-86ba059b gb-button-text\" href=\"https:\/\/www.nature.com\/articles\/s41598-026-45789-3.epdf?sharing_token=mEpnCamYfi9NxVs2IHbbjdRgN0jAjWel9jnR3ZoTv0Oe0wdgranKOEPVOAPZeNfuRJfF7FbI6V-herx4yAl6vSzCD5IXKNBivRz7yGxLzJEVCrtbKKx9Wt-4FxZM7Cdd6KDyllnMopvadf1U5CnaxpsyTWsz3Wm5aZSD9e5R7PU%3D\" target=\"_blank\" rel=\"noopener noreferrer\">Voir la publication<\/a>\n\n\n\n<div style=\"height:48px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" width=\"1024\" height=\"192\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/04\/logoFinal-1024x192.jpg\" alt=\"Registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires\" class=\"wp-image-19439\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/04\/logoFinal-1024x192.jpg 1024w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/04\/logoFinal-300x56.jpg 300w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/04\/logoFinal-768x144.jpg 768w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/04\/logoFinal-18x3.jpg 18w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/04\/logoFinal.jpg 1485w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Merci \u00e0 notre communaut\u00e9<\/strong><\/h3>\n\n\n\n<p>Cette recherche n'a \u00e9t\u00e9 possible que gr\u00e2ce aux aidants qui ont partag\u00e9 leurs exp\u00e9riences. Votre participation contribue \u00e0 fa\u00e7onner l'avenir des soins de la PC.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Comment vous pouvez aider<\/strong><\/h3>\n\n\n\n<p>Si vous \u00eates un survivant de la PC ou un soignant, vous pouvez avoir un impact r\u00e9el.<\/p>\n\n\n\n<p>En rejoignant le <a href=\"https:\/\/www.rawoodfoundation.org\/fr\/registre-des-tumeurs\/\">Registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires<\/a>, vous :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Aider les chercheurs \u00e0 comprendre cette maladie rare<\/li>\n\n\n\n<li>Contribuer \u00e0 l'am\u00e9lioration des traitements et des soins<\/li>\n\n\n\n<li>Soutien aux futures familles confront\u00e9es \u00e0 la PC<\/li>\n<\/ul>\n\n\n\n<p>Votre exp\u00e9rience est importante et elle permet de mettre en lumi\u00e8re les exp\u00e9riences r\u00e9elles des survivants de la PC et des soignants en vue de trouver de vraies solutions. 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<a class=\"gb-button gb-button-11b186c6 gb-button-text\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/registre-des-tumeurs\/\">Rejoindre le registre<\/a>\n\n\n\n<p><\/p>\n\n\n\n<a class=\"gb-button gb-button-7e1d3128 gb-button-text\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/faire-un-don\/\">Soutenir notre travail<\/a>\n\n\n\n<p><\/p>","protected":false},"excerpt":{"rendered":"<p>Une nouvelle \u00e9tude met en lumi\u00e8re l'hyperphagie dans le craniopharyngiome Nous sommes ravis de vous faire part de la publication ... <a title=\"Mieux comprendre l&#039;hyperphagie dans la PC\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/2026\/04\/01\/advancing-understanding-of-hyperphagia-in-cp\/\" aria-label=\"Read more about Advancing Understanding of Hyperphagia in CP\">Lire plus<\/a><\/p>","protected":false},"author":6,"featured_media":19444,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[41,20],"tags":[],"class_list":["post-19433","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","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 v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Advancing Understanding of Hyperphagia in CP - Raymond A. 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