{"id":18730,"date":"2026-02-20T15:18:26","date_gmt":"2026-02-20T15:18:26","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=18730"},"modified":"2026-02-20T15:18:27","modified_gmt":"2026-02-20T15:18:27","slug":"un-nuevo-capitulo-en-la-investigacion-de-tumores-cerebrales-raros","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2026\/02\/20\/un-nuevo-capitulo-en-la-investigacion-de-tumores-cerebrales-raros\/","title":{"rendered":"Un nuevo cap\u00edtulo en la investigaci\u00f3n de tumores cerebrales raros: El registro de pacientes con tumores cerebrales hipotal\u00e1mico-hipofisarios"},"content":{"rendered":"<p>En 2024, la Fundaci\u00f3n Raymond A. Wood puso en marcha una iniciativa innovadora que est\u00e1 creando un verdadero impulso en la investigaci\u00f3n de las enfermedades raras: el <a href=\"https:\/\/www.rawoodfoundation.org\/es\/hptumorregistry\/\">Registro de pacientes con tumores cerebrales hipotal\u00e1mico-hipofisarios<\/a>. Este registro internacional es una poderosa plataforma para que pacientes y cuidadores se re\u00fanan, expresen sus retos y perspectivas, y compartan datos con m\u00e9dicos e investigadores, para acelerar el progreso hacia una mejor comprensi\u00f3n y tratamiento de estos tumores raros. Desde su creaci\u00f3n, el Registro de Pacientes se ha ampliado hasta incluir las voces de 397 cuidadores y pacientes. A medida que continuamos nuestra misi\u00f3n de hacer crecer el registro de pacientes, aqu\u00ed hay algunas actualizaciones sobre su historia y progreso actual.<\/p>\n\n\n\n<p><strong>Nos complace anunciar que el registro se traducir\u00e1 al espa\u00f1ol y al franc\u00e9s en los pr\u00f3ximos meses. Permanezca atento.<\/strong><\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>\u00bfQu\u00e9 es el registro de pacientes con tumores cerebrales hipotal\u00e1mico-hipofisarios?<\/strong><\/h2>\n\n\n\n<p>El registro es una base de datos segura, en l\u00ednea, dise\u00f1ada para recopilar informaci\u00f3n detallada de supervivientes y cuidadores sobre tumores cerebrales hipotal\u00e1mico-hipofisarios durante varios a\u00f1os. Estos tumores poco frecuentes afectan a estructuras cerebrales cr\u00edticas que controlan funciones endocrinas, visuales e intelectuales vitales, as\u00ed como disfunciones hipotal\u00e1micas de gran alcance.  Fue desarrollado por RAWF en colaboraci\u00f3n con expertos mundiales y defensores de la comunidad de pacientes para apoyar la investigaci\u00f3n y mejorar los resultados para las personas afectadas por estas enfermedades. Organizado por la National Organization for Rare Disorders (NORD) en su sitio web <a href=\"https:\/\/iamrare.org\/\">Plataforma IAMRARE\u00ae,<\/a> el registro sirve de eje central donde los participantes pueden compartir de forma segura su historial m\u00e9dico, s\u00edntomas, tratamientos y experiencias vividas.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Por qu\u00e9 es importante su participaci\u00f3n en el Registro de Pacientes con Tumores Cerebrales Hipotal\u00e1mico-Hipofisarios<\/strong><\/h2>\n\n\n\n<p>Formar parte del registro no es s\u00f3lo cuesti\u00f3n de datos.  Se trata de que su voz cuente en la investigaci\u00f3n que importa. As\u00ed es como ayuda su participaci\u00f3n:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Avanzar en la comprensi\u00f3n cient\u00edfica:<\/strong> Los datos compartidos ayudan a los investigadores a observar patrones en el modo en que estos tumores, sus tratamientos y las comorbilidades relacionadas se desarrollan y progresan a lo largo del tiempo.<\/li>\n\n\n\n<li><strong>Capacitar a las comunidades de pacientes:<\/strong> Las experiencias vividas que usted comparte ayudan a dar forma a las preguntas de investigaci\u00f3n y a orientar el desarrollo terap\u00e9utico que m\u00e9dicos y cient\u00edficos persiguen a continuaci\u00f3n.<\/li>\n\n\n\n<li><strong>Mejorar la atenci\u00f3n y los resultados:<\/strong> La informaci\u00f3n obtenida de las experiencias reales de los pacientes ayuda a los m\u00e9dicos a adaptar las estrategias asistenciales y a detectar las necesidades no cubiertas a lo largo de todo el proceso.<\/li>\n\n\n\n<li><strong>Apoyar estudios cl\u00ednicos:<\/strong> Las entradas de pacientes pueden apoyar el reclutamiento para nuevos ensayos cl\u00ednicos y estudios terap\u00e9uticos.<\/li>\n<\/ul>\n\n\n\n<p>Este esfuerzo colectivo significa que cada voz contribuye a una visi\u00f3n m\u00e1s amplia y confiere a los pacientes y cuidadores un poderoso papel a la hora de impulsar el progreso.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Avances actuales del registro de pacientes con tumores cerebrales hipotal\u00e1mico-hipofisarios<\/strong><\/h2>\n\n\n\n<p>Estos son algunos de los datos y actualizaciones que hemos recopilado:<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" width=\"1024\" height=\"652\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/02\/graphs-1024x652.png\" alt=\"\" class=\"wp-image-18734\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/02\/graphs-1024x652.png 1024w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/02\/graphs-300x191.png 300w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/02\/graphs-768x489.png 768w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/02\/graphs-18x12.png 18w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/02\/graphs.png 1036w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<p>Pa\u00edses de residencia<\/p>\n\n\n\n<p>El registro est\u00e1 abierto a pacientes de todo el mundo. Actualmente, los participantes en el registro son:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>74% desde EE.UU.<\/li>\n\n\n\n<li>9% desde el Reino Unido<\/li>\n\n\n\n<li>5% de Canad\u00e1<\/li>\n\n\n\n<li>3% de Australia<\/li>\n\n\n\n<li>9% otros<\/li>\n<\/ul>\n\n\n\n<p>Distribuci\u00f3n por edad de los supervivientes<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>La edad de los supervivientes oscila entre los 3 y los 76 a\u00f1os, y la mayor\u00eda se sit\u00faa entre los 11 y los 20 a\u00f1os.<\/li>\n<\/ul>\n\n\n\n<p>Diagn\u00f3stico de la obesidad hipotal\u00e1mica<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>54% de supervivientes tienen diagn\u00f3stico de Obesidad Hipotal\u00e1mica 46% de supervivientes no tienen diagn\u00f3stico de Obesidad Hipotal\u00e1mica<\/li>\n<\/ul>\n\n\n\n<p>Sexo de los supervivientes<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>59% de los supervivientes son mujeres, y 41% son hombres<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>C\u00f3mo puede ayudar al Registro de pacientes con tumores cerebrales hipotal\u00e1mico-hipofisarios<\/strong><\/h2>\n\n\n\n<p>Inscr\u00edbase en el registro si a\u00fan no lo ha hecho<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Visite el registro a trav\u00e9s del sitio web de RAWF <a href=\"https:\/\/hptumorregistry.iamrare.org\/\">Registro de pacientes con tumores cerebrales hipotal\u00e1mico-hipofisarios<\/a><\/li>\n\n\n\n<li>Rellene encuestas en l\u00ednea sobre su diagn\u00f3stico, historial m\u00e9dico, problemas de salud, tratamientos y experiencias.<\/li>\n<\/ul>\n\n\n\n<p>Si ya se ha inscrito en el registro<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Est\u00e9 atento a las nuevas preguntas de la encuesta y actualice sus datos anualmente para mantenerlos al d\u00eda. Esto es importante para comprender mejor c\u00f3mo cambia la enfermedad y c\u00f3mo evolucionan sus perspectivas y necesidades con el tiempo.<\/li>\n<\/ul>\n\n\n\n<p>La participaci\u00f3n est\u00e1 abierta a pacientes y cuidadores de todo el mundo que deseen marcar la diferencia en la investigaci\u00f3n y en la comunidad de pacientes en general.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Juntos podemos impulsar el descubrimiento<\/strong><\/h2>\n\n\n\n<p>Los datos colectivos de este registro tienen un poder real para profundizar en nuestra comprensi\u00f3n cient\u00edfica, guiar el desarrollo de futuros tratamientos y mejorar la vida de los pacientes y sus cuidadores. Tanto si padece un tumor hipotal\u00e1mico hipofisario como si apoya a alguien que lo padece, su participaci\u00f3n puede ayudar a dar forma al futuro de la atenci\u00f3n sanitaria.<\/p>\n\n\n\n<p><strong>\u00bfQuieres unirte o saber m\u00e1s?<\/strong> Dir\u00edjase a la plataforma de registro y forme parte de esta comunidad mundial de investigaci\u00f3n.<\/p>\n\n\n\n<p><strong>Si tiene preguntas<\/strong>No dude en ponerse en contacto con Kirsten Schreuders, Coordinadora del Registro, en: kirsten@rawoodfoundation.org<\/p>","protected":false},"excerpt":{"rendered":"<p>En 2024, la Fundaci\u00f3n Raymond A. Wood puso en marcha una iniciativa pionera que est\u00e1 creando ... <a title=\"Un nuevo cap\u00edtulo en la investigaci\u00f3n de tumores cerebrales raros: El registro de pacientes con tumores cerebrales hipotal\u00e1mico-hipofisarios\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/es\/2026\/02\/20\/un-nuevo-capitulo-en-la-investigacion-de-tumores-cerebrales-raros\/\" aria-label=\"Leer m\u00e1s sobre Un nuevo cap\u00edtulo en la investigaci\u00f3n de tumores cerebrales raros: El registro de pacientes con tumores cerebrales hipotal\u00e1mico-hipofisarios\">Seguir leyendo<\/a><\/p>","protected":false},"author":6,"featured_media":18760,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[42,65,30],"tags":[],"class_list":["post-18730","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-health-medical","category-patient-support","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 v25.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>A New Chapter in Rare Brain Tumor Research: The Hypothalamic-Pituitary Brain Tumors Patient Registry - Raymond A. 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