{"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":"registro-aniversario","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2025\/05\/16\/registry-anniversary\/","title":{"rendered":"Un a\u00f1o. 350 voces. Innumerables ideas."},"content":{"rendered":"<h2 class=\"wp-block-heading\">Celebraci\u00f3n del primer aniversario del Registro de Pacientes con Tumores Cerebrales Hipotal\u00e1mico-Hipofisarios, y del poder de la experiencia compartida para impulsar el cambio.<\/h2>\n\n\n\n<p>Hace un a\u00f1o, la Fundaci\u00f3n Raymond A. Wood puso en marcha el Registro de Pacientes con Tumores Cerebrales Hipotal\u00e1mico-Hipofisarios con una visi\u00f3n: reunir las experiencias vividas por pacientes y cuidadores para avanzar en la investigaci\u00f3n, mejorar la atenci\u00f3n y, en \u00faltima instancia, cambiar vidas. Hoy nos enorgullece compartir lo lejos que hemos llegado y lo lejos que podemos llegar juntos.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">En cifras<\/h3>\n\n\n\n<p>En s\u00f3lo 12 meses, casi 350 personas se han unido al registro, entre ellas 310 diagnosticados de craneofaringioma (CP). Este es un testimonio incre\u00edble del poder de la comunidad y de un compromiso compartido con la ciencia y la defensa.<\/p>\n\n\n\n<p><strong>D\u00f3nde viven nuestros participantes:<\/strong><br>Aunque 73% de nuestros participantes en el CP proceden de Estados Unidos, hemos acogido a miembros del registro de otros 22 pa\u00edses, como Argentina, Brasil, Australia, Canad\u00e1, Egipto y de toda Europa, Asia y Sudam\u00e9rica. Esta representaci\u00f3n mundial subraya los retos universales de esta enfermedad rara y la importancia de la acci\u00f3n colectiva.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Lo que estamos aprendiendo<\/h3>\n\n\n\n<p>Este registro no consiste \u00fanicamente en recopilar datos, sino tambi\u00e9n en descubrir ideas que puedan impulsar un cambio significativo. He aqu\u00ed algunas de las conclusiones m\u00e1s importantes del primer a\u00f1o:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>65% de los participantes en el CP no han experimentado recidiva tumoral.<\/li>\n\n\n\n<li>49% han sido diagnosticados de obesidad hipotal\u00e1mica (HO), en consonancia con la literatura m\u00e9dica existente. Sin embargo, 9% siguen sin estar seguros de tener este diagn\u00f3stico, lo que pone de manifiesto la necesidad de mejorar la educaci\u00f3n y la atenci\u00f3n.<\/li>\n\n\n\n<li>Por t\u00e9rmino medio, los pacientes declaran tener 14 problemas de salud despu\u00e9s del tratamiento, y la fatiga es uno de los s\u00edntomas m\u00e1s molestos tras el hipopituitarismo.<\/li>\n<\/ul>\n\n\n\n<p><strong>El impacto en los comportamientos alimentarios es profundo:<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>78% experimentaron un aumento de peso significativo tras el tratamiento.<\/li>\n\n\n\n<li>52% not\u00f3 un fuerte aumento del hambre inmediatamente despu\u00e9s del tratamiento.<\/li>\n\n\n\n<li>42% de los pacientes con PC han tenido comportamientos de b\u00fasqueda de alimentos, como robar comida o dinero, debido al hambre extrema.<\/li>\n\n\n\n<li>En los ni\u00f1os, se inform\u00f3 de que 12% com\u00edan art\u00edculos no comestibles o desagradables para intentar saciar ese hambre.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">Educaci\u00f3n y trabajo<\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li>42% de las personas con PC recibieron educaci\u00f3n especial o apoyo en la escuela.<\/li>\n\n\n\n<li>11% tienen un m\u00e1ster y 7 se han doctorado, lo que demuestra la resistencia y determinaci\u00f3n de esta comunidad.<\/li>\n\n\n\n<li>A pesar de los continuos problemas de salud, 33% trabajan a tiempo completo o parcial, redefiniendo lo que significa vivir con PC.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">Avanzar en la investigaci\u00f3n<\/h3>\n\n\n\n<p>El a\u00f1o pasado, el registro apoy\u00f3 o puso en marcha tres proyectos de investigaci\u00f3n:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Comportamientos alimentarios en la par\u00e1lisis cerebral<\/li>\n\n\n\n<li>Prioridades de tratamiento desde la perspectiva del paciente\/cuidador<\/li>\n\n\n\n<li>Fatiga en colaboraci\u00f3n con Rhythm Pharmaceuticals<\/li>\n<\/ul>\n\n\n\n<p>Adem\u00e1s, cuatro grupos de investigaci\u00f3n externos utilizaron el registro para reclutar participantes para sus ensayos o estudios cl\u00ednicos, una demostraci\u00f3n directa de c\u00f3mo su participaci\u00f3n est\u00e1 acelerando la investigaci\u00f3n.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Gracias por unirse a nosotros<\/h3>\n\n\n\n<p>A los que se han inscrito: gracias. Su voz, su experiencia y su tiempo est\u00e1n teniendo un impacto mucho m\u00e1s all\u00e1 de este registro. Forman parte de un movimiento para transformar la atenci\u00f3n a una poblaci\u00f3n a la que con demasiada frecuencia no se escucha.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">\u00bfA\u00fan no forma parte del Registro?<\/h3>\n\n\n\n<p>Si usted o un ser querido padece un tumor cerebral hipotal\u00e1mico-hipofisario como el craneofaringioma, su historia es importante. Cada dato nos ayuda a hacernos una idea m\u00e1s completa de la vida con esta enfermedad: qu\u00e9 funciona en el tratamiento, d\u00f3nde falta apoyo y c\u00f3mo podemos crear un futuro mejor para todos.<\/p>\n\n\n\n<p><strong><a href=\"https:\/\/www.rawoodfoundation.org\/es\/hptumorregistry\/\">Inscr\u00edbase hoy en el registro<\/a> y participe en el pr\u00f3ximo cap\u00edtulo de la investigaci\u00f3n y la defensa de las enfermedades raras.<\/strong><\/p>\n\n\n\n<p>Juntos estamos construyendo algo poderoso. Brindemos por otro a\u00f1o de progreso, colaboraci\u00f3n y posibilidades.<\/p>\n\n\n\n<p><\/p>","protected":false},"excerpt":{"rendered":"<p>Celebrando el primer aniversario del Registro de Pacientes con Tumores Cerebrales Hipotal\u00e1mico-Hipofisarios, y el poder de ... <a title=\"Un a\u00f1o. 350 voces. Innumerables ideas.\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/es\/2025\/05\/16\/registry-anniversary\/\" aria-label=\"Leer m\u00e1s sobre Un a\u00f1o. 350 voces. Innumerables ideas.\">Seguir leyendo<\/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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