{"id":9253,"date":"2024-05-16T14:17:30","date_gmt":"2024-05-16T14:17:30","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=9253"},"modified":"2024-05-29T16:34:02","modified_gmt":"2024-05-29T16:34:02","slug":"la-fondation-raymond-a-wood-et-le-nord-lancent-une-etude-de-lhistoire-naturelle-des-tumeurs-hypothalamo-hypophysaires-rares","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2024\/05\/16\/the-raymond-a-wood-foundation-and-nord-launch-natural-history-study-of-rare-hypothalamic-pituitary-brain-tumors\/","title":{"rendered":"La Fondation Raymond A. Wood et NORD\u00ae lancent une \u00e9tude sur l'histoire naturelle des tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires rares."},"content":{"rendered":"<h2 class=\"wp-block-heading\">L'\u00e9tude de recherche est ouverte aux participants du monde entier afin de faire progresser la compr\u00e9hension et le traitement de ces maladies rares.<\/h2>\n\n\n\n<p>La Fondation Raymond A. Wood, en collaboration avec la National Organization for Rare Disorders (NORD\u00ae), lance aujourd'hui une \u00e9tude novatrice sur les tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires rares. Ces tumeurs peuvent entra\u00eener toute une s\u00e9rie de sympt\u00f4mes d\u00e9bilitants, notamment des d\u00e9ficits hormonaux, des d\u00e9ficiences visuelles, des difficult\u00e9s psychosociales, des troubles cognitifs et un dysfonctionnement hypothalamique entra\u00eenant un d\u00e9r\u00e8glement de la temp\u00e9rature, des troubles du sommeil, l'ob\u00e9sit\u00e9 et l'hyperphagie.<\/p>\n\n\n\n<p>Le registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires constitue une plate-forme mondiale permettant aux personnes touch\u00e9es par ces tumeurs rares de partager des informations vitales. Son principal objectif est de cr\u00e9er une ressource internationale qui stimulera la recherche scientifique future dans ce domaine. Les tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires, qui touchent environ une personne sur un million, posent des probl\u00e8mes complexes, le traitement consistant g\u00e9n\u00e9ralement en une r\u00e9section chirurgicale avec ou sans radioth\u00e9rapie. Les manifestations cliniques varient consid\u00e9rablement en fonction de facteurs tels que la localisation de la tumeur, sa taille, son mode de croissance et sa relation avec les structures c\u00e9r\u00e9brales adjacentes.<\/p>\n\n\n\n<p>Amy Wood, cofondatrice et directrice ex\u00e9cutive de la Raymond A. Wood Foundation, a soulign\u00e9 l'importance de cette initiative en d\u00e9clarant : \"Cette ressource mondiale fournira des donn\u00e9es aux chercheurs pour faire progresser le d\u00e9veloppement de m\u00e9dicaments et de traitements, centr\u00e9s sur les besoins des patients afin d'am\u00e9liorer les soins prodigu\u00e9s \u00e0 nos proches\".<\/p>\n\n\n\n<p>Afin de sensibiliser le public et d'encourager la participation, la Fondation Raymond A. Wood mettra en \u0153uvre un vaste plan de lancement, comprenant une campagne dans les m\u00e9dias sociaux, des s\u00e9minaires en ligne et des \u00e9v\u00e9nements.<\/p>\n\n\n\n<p>\"Le succ\u00e8s du registre d\u00e9pend de la participation de la communaut\u00e9. Notre objectif est d'inscrire le plus grand nombre possible de patients, de parents ou de tuteurs l\u00e9gaux\", a d\u00e9clar\u00e9 Mme Wood.<\/p>\n\n\n\n<p>Le registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires est une \u00e9tude compl\u00e8te de l'histoire naturelle comprenant des enqu\u00eates \u00e9lectroniques con\u00e7ues pour recueillir des informations sur l'exp\u00e9rience des patients et l'\u00e9volution de la maladie. Les patients, ainsi que leurs soignants ou tuteurs, peuvent saisir des donn\u00e9es depuis n'importe o\u00f9 dans le monde. Toutes les informations sont confidentielles et stock\u00e9es en toute s\u00e9curit\u00e9 sur le portail en ligne d'IAMRARE. La Fondation Raymond A. Wood peut partager les donn\u00e9es avec des individus ou des institutions menant des recherches ou des essais cliniques, sous r\u00e9serve de l'approbation du comit\u00e9 directeur de l'\u00e9tude, qui comprend des scientifiques, des m\u00e9decins et des d\u00e9fenseurs des patients.<\/p>\n\n\n\n<p>La Raymond A. Wood Foundation et NORD ont uni leurs forces dans cette entreprise, tirant parti de l'expertise de NORD en mati\u00e8re de plateformes d'\u00e9tude de l'histoire naturelle dans le cadre de leur mission collective visant \u00e0 traiter l'ensemble des 7 000 maladies rares.<\/p>\n\n\n\n<p>\"NORD se r\u00e9jouit du lancement de cette nouvelle \u00e9tude importante sur l'histoire naturelle. Cette recherche innovante et essentielle ne pouvait pas mieux tomber pour les membres de la communaut\u00e9 des tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires. Avec NORD, ce nouveau projet de recherche peut faire entendre les voix et les histoires des patients, des familles et des membres de la communaut\u00e9 des maladies rares \", d\u00e9clare Aliza Fink, DSc, directrice des donn\u00e9es et de l'analyse de la recherche chez NORD.<\/p>\n\n\n\n<p><a href=\"https:\/\/www.rawoodfoundation.org\/fr\/registre-des-tumeurs\/\">Rejoindre le registre ou en savoir plus sur ce projet.<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>L'\u00e9tude de recherche est ouverte aux participants du monde entier afin de faire progresser la compr\u00e9hension et les traitements de ces maladies rares ... <a title=\"La Fondation Raymond A. Wood et NORD\u00ae lancent une \u00e9tude sur l&#039;histoire naturelle des tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires rares.\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/2024\/05\/16\/the-raymond-a-wood-foundation-and-nord-launch-natural-history-study-of-rare-hypothalamic-pituitary-brain-tumors\/\" aria-label=\"Pour en savoir plus sur la Fondation Raymond A. Wood et NORD\u00ae lancent une \u00e9tude sur l&#039;histoire naturelle des tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires rares.\">Lire plus<\/a><\/p>","protected":false},"author":4,"featured_media":9257,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[41,35,20],"tags":[],"class_list":["post-9253","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","category-craniopharyngioma","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>The Raymond A. Wood Foundation and NORD\u00ae Launch Natural History Study of Rare Hypothalamic-Pituitary Brain tumors. - Raymond A. Wood Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/2024\/05\/16\/la-fondation-raymond-a-wood-et-le-nord-lancent-une-etude-de-lhistoire-naturelle-des-tumeurs-hypothalamo-hypophysaires-rares\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"The Raymond A. Wood Foundation and NORD\u00ae Launch Natural History Study of Rare Hypothalamic-Pituitary Brain tumors. - Raymond A. Wood Foundation\" \/>\n<meta property=\"og:description\" content=\"Research study is open to participants worldwide to advance understanding and treatments these rare diseases ... 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