{"id":9335,"date":"2024-07-23T19:28:14","date_gmt":"2024-07-23T19:28:14","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?page_id=9335"},"modified":"2025-05-05T17:53:48","modified_gmt":"2025-05-05T17:53:48","slug":"para-investigadores","status":"publish","type":"page","link":"https:\/\/www.rawoodfoundation.org\/es\/for-researchers\/","title":{"rendered":"Para investigadores"},"content":{"rendered":"<h2 class=\"wp-block-heading\">Recursos para avanzar en la investigaci\u00f3n de los tumores cerebrales hipotal\u00e1mico-hipofisarios<\/h2>\n\n\n\n<p>En la Fundaci\u00f3n Raymond A. Wood estamos comprometidos con el avance de la comprensi\u00f3n cient\u00edfica y el tratamiento cl\u00ednico de los tumores cerebrales hipotal\u00e1mico-hipofisarios. Esta secci\u00f3n est\u00e1 dedicada a proporcionar a los investigadores recursos completos, datos de vanguardia y oportunidades de colaboraci\u00f3n esenciales para la investigaci\u00f3n pionera y los tratamientos innovadores.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\">Informaci\u00f3n sobre enfermedades<\/h3>\n\n\n<div class=\"gb-grid-wrapper gb-grid-wrapper-cb0391de\">\n<div class=\"gb-grid-column gb-grid-column-f8123791\"><div class=\"gb-container gb-container-f8123791\"><a class=\"gb-container-link\" href=\"https:\/\/live-rawf.pantheonsite.io\/managing-diabetes-insipidus\/\" aria-label=\"Tumores hipotal\u00e1mico-hipofisarios\"><\/a>\n<div class=\"gb-container gb-container-85bc812e\"><a class=\"gb-container-link\" href=\"https:\/\/live-rawf.pantheonsite.io\/hypothalamic-pituitary-brain-tumors\/\" aria-label=\"Tumores hipotal\u00e1mico-hipofisarios\"><\/a>\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<h6 class=\"wp-block-heading\">Tumores hipotal\u00e1mico-hipofisarios<\/h6>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:33.33%\"><div class=\"wp-block-image\">\n<figure class=\"alignleft size-large\"><img decoding=\"async\" width=\"100\" height=\"100\" src=\"https:\/\/live-rawf.pantheonsite.io\/wp-content\/uploads\/2023\/06\/brain.svg\" alt=\"icono de cerebro\" class=\"wp-image-7285\" style=\"object-fit:cover\"\/><\/figure><\/div><\/div>\n<\/div>\n\n<\/div>\n<\/div><\/div>\n\n<div class=\"gb-grid-column gb-grid-column-1cc608a9\"><div class=\"gb-container gb-container-1cc608a9\">\n<div class=\"gb-container gb-container-bace8486\"><a class=\"gb-container-link\" href=\"https:\/\/live-rawf.pantheonsite.io\/craniopharyngioma\/\" aria-label=\"Craneofaringioma\"><\/a>\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<h6 class=\"wp-block-heading\">Craneofaringioma<\/h6>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:33.33%\"><div class=\"wp-block-image\">\n<figure class=\"alignleft size-large\"><img decoding=\"async\" width=\"100\" height=\"100\" src=\"https:\/\/live-rawf.pantheonsite.io\/wp-content\/uploads\/2023\/06\/brain.svg\" alt=\"icono de cerebro\" class=\"wp-image-7285\"\/><\/figure><\/div><\/div>\n<\/div>\n\n<\/div>\n<\/div><\/div>\n\n<div class=\"gb-grid-column gb-grid-column-5c9582ad\"><div class=\"gb-container gb-container-5c9582ad\">\n<div class=\"gb-container gb-container-29b47932\"><a class=\"gb-container-link\" href=\"https:\/\/live-rawf.pantheonsite.io\/hypopituitarism\/\" aria-label=\"Hipopituitarismo\"><\/a>\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<h6 class=\"wp-block-heading\">Hipopituitarismo<\/h6>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:33.33%\"><div class=\"wp-block-image\">\n<figure class=\"alignleft size-large\"><img decoding=\"async\" width=\"100\" height=\"100\" src=\"https:\/\/live-rawf.pantheonsite.io\/wp-content\/uploads\/2023\/06\/brain.svg\" alt=\"icono de cerebro\" class=\"wp-image-7285\"\/><\/figure><\/div><\/div>\n<\/div>\n\n<\/div>\n<\/div><\/div>\n<\/div>\n\n<div class=\"gb-grid-wrapper gb-grid-wrapper-a102a347\">\n<div class=\"gb-grid-column gb-grid-column-d8d4f066\"><div class=\"gb-container gb-container-d8d4f066\"><a class=\"gb-container-link\" href=\"https:\/\/live-rawf.pantheonsite.io\/managing-diabetes-insipidus\/\" aria-label=\"Diabetes ins\u00edpida\"><\/a>\n<div class=\"gb-container gb-container-1fbd2c79\">\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<h6 class=\"wp-block-heading\">Diabetes ins\u00edpida<\/h6>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:33.33%\"><div class=\"wp-block-image\">\n<figure class=\"alignleft size-large\"><img decoding=\"async\" width=\"100\" height=\"100\" src=\"https:\/\/live-rawf.pantheonsite.io\/wp-content\/uploads\/2023\/06\/water.svg\" alt=\"icono de gota de agua\" class=\"wp-image-7291\" style=\"object-fit:cover\"\/><\/figure><\/div><\/div>\n<\/div>\n\n<\/div>\n<\/div><\/div>\n\n<div class=\"gb-grid-column gb-grid-column-964d9dd6\"><div class=\"gb-container gb-container-964d9dd6\">\n<div class=\"gb-container gb-container-8052ff2b\"><a class=\"gb-container-link\" href=\"https:\/\/live-rawf.pantheonsite.io\/hypothalamic-obesity\/\" aria-label=\"Obesidad hipotal\u00e1mica\"><\/a>\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<h6 class=\"wp-block-heading\">Obesidad hipotal\u00e1mica<\/h6>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:33.33%\"><div class=\"wp-block-image\">\n<figure class=\"alignleft size-large\"><img decoding=\"async\" width=\"100\" height=\"100\" src=\"https:\/\/live-rawf.pantheonsite.io\/wp-content\/uploads\/2023\/06\/scale.svg\" alt=\"Icono de escala\" class=\"wp-image-7287\"\/><\/figure><\/div><\/div>\n<\/div>\n\n<\/div>\n<\/div><\/div>\n\n<div class=\"gb-grid-column gb-grid-column-4aa0e397\"><div class=\"gb-container gb-container-4aa0e397\">\n<div class=\"gb-container gb-container-3e46d788\"><a class=\"gb-container-link\" href=\"https:\/\/live-rawf.pantheonsite.io\/adrenal-insufficiency\/\" aria-label=\"Insuficiencia suprarrenal\"><\/a>\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<h6 class=\"wp-block-heading\">Insuficiencia suprarrenal<\/h6>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:33.33%\"><div class=\"wp-block-image\">\n<figure class=\"alignleft size-large\"><img decoding=\"async\" width=\"100\" height=\"100\" src=\"https:\/\/live-rawf.pantheonsite.io\/wp-content\/uploads\/2023\/06\/case.svg\" alt=\"Icono del caso del m\u00e9dico\" class=\"wp-image-7290\"\/><\/figure><\/div><\/div>\n<\/div>\n\n<\/div>\n<\/div><\/div>\n<\/div>\n\n<div class=\"gb-container gb-container-087e47a4\"><a class=\"gb-container-link\" href=\"https:\/\/live-rawf.pantheonsite.io\/managing-diabetes-insipidus\/\" aria-label=\"Deficiencia de la hormona del crecimiento\"><\/a>\n<div class=\"gb-container gb-container-73f8de04\"><a class=\"gb-container-link\" href=\"https:\/\/live-rawf.pantheonsite.io\/growth-hormore-replacement\/\" aria-label=\"Deficiencia de la hormona del crecimiento\"><\/a>\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<h6 class=\"wp-block-heading\">Deficiencia de la hormona del crecimiento<\/h6>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:33.33%\"><div class=\"wp-block-image\">\n<figure class=\"alignleft size-large\"><img decoding=\"async\" width=\"101\" height=\"101\" src=\"https:\/\/live-rawf.pantheonsite.io\/wp-content\/uploads\/2023\/08\/growth.svg\" alt=\"Icono con regla\" class=\"wp-image-8366\" style=\"object-fit:cover\"\/><\/figure><\/div><\/div>\n<\/div>\n\n<\/div>\n<\/div>\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\">Plan Estrat\u00e9gico de Investigaci\u00f3n<\/h3>\n\n\n<div class=\"gb-grid-wrapper gb-grid-wrapper-f2cd2e4a\">\n<div class=\"gb-grid-column gb-grid-column-8bb88f34\"><div class=\"gb-container gb-container-8bb88f34\">\n\n<p>Para hacer frente al largo, costoso y arriesgado proceso de desarrollo de nuevas terapias, RAWF ha llevado a cabo una evaluaci\u00f3n exhaustiva de las lagunas y necesidades de investigaci\u00f3n en los estudios sobre tumores cerebrales hipotal\u00e1mico-hipofisarios. Esto ha llevado a la creaci\u00f3n de un plan estrat\u00e9gico de investigaci\u00f3n centrado en el paciente y destinado a maximizar la eficiencia, reducir el tiempo de desarrollo y aumentar el \u00e9xito en la b\u00fasqueda de tratamientos significativos. El plan incluye un an\u00e1lisis detallado de las carencias en todas las fases del desarrollo de f\u00e1rmacos y una evaluaci\u00f3n de las infraestructuras.<\/p>\n\n<\/div><\/div>\n\n<div class=\"gb-grid-column gb-grid-column-5b83d83c\"><div class=\"gb-container gb-container-5b83d83c\">\n\n<figure class=\"wp-block-image size-large is-resized\"><a href=\"https:\/\/live-rawf.pantheonsite.io\/wp-content\/uploads\/2023\/07\/Craniopharyngioma-Research-Report.pdf\" target=\"_blank\" rel=\"noreferrer noopener\"><img decoding=\"async\" width=\"789\" height=\"1024\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/06\/image-26-789x1024.jpg\" alt=\"Informe estrat\u00e9gico de investigaci\u00f3n sobre el craneofaringioma\" class=\"wp-image-6596\" style=\"width:196px;height:255px\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/06\/image-26-789x1024.jpg 789w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/06\/image-26-231x300.jpg 231w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/06\/image-26-768x996.jpg 768w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/06\/image-26-1184x1536.jpg 1184w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/06\/image-26-9x12.jpg 9w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/06\/image-26.jpg 1520w\" sizes=\"(max-width: 789px) 100vw, 789px\" \/><\/a><\/figure>\n\n<\/div><\/div>\n<\/div>\n\n\n<h4 class=\"wp-block-heading\">3 Prioridades de investigaci\u00f3n<\/h4>\n\n\n\n<p>Para impulsar la aplicaci\u00f3n del plan estrat\u00e9gico de investigaci\u00f3n de la RAWF, se definieron tres prioridades de investigaci\u00f3n:<\/p>\n\n\n\n<p><strong>Desarrollar un registro de pacientes<\/strong>&nbsp;facilitar la investigaci\u00f3n, fundamentar la toma de decisiones m\u00e9dicas, identificar patrones y mejorar la atenci\u00f3n y los resultados de los pacientes mediante un conocimiento m\u00e1s profundo de las enfermedades y sus tratamientos<\/p>\n\n\n\n<p><strong>Recopilar datos basados en pruebas&nbsp;<\/strong>sobre los puntos de vista de pacientes y cuidadores en cuanto a s\u00edntomas de importancia, prioridades de tratamiento y evaluaci\u00f3n de beneficios\/riesgos.<\/p>\n\n\n\n<p><strong>Desarrollar una red internacional<\/strong>&nbsp;de expertos en craneofaringioma, incluidos cl\u00ednicos, investigadores, cirujanos y pacientes y cuidadores.<\/p>\n\n\n\n<p><a href=\"https:\/\/live-rawf.pantheonsite.io\/wp-content\/uploads\/2023\/07\/Craniopharyngioma-Research-Report.pdf\" target=\"_blank\" rel=\"noreferrer noopener\">Explore el informe de investigaci\u00f3n completo de RAWF para saber m\u00e1s sobre nuestras conclusiones, prioridades y actividades de investigaci\u00f3n a largo plazo.<\/a><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Herramientas y recursos<\/strong><\/h3>\n\n\n\n<p>Para ayudarle a acelerar el progreso hacia tratamientos que mejoren la vida de las personas diagnosticadas o supervivientes de tumores cerebrales hipotal\u00e1mico-hipofisarios.<\/p>\n\n\n\n<p>Apoyamos el desarrollo de muchas herramientas y recursos \u00fatiles para ayudarle a acelerar el progreso hacia nuevos conocimientos cient\u00edficos y nuevas terapias para los tumores cerebrales hipotal\u00e1mico-hipofisarios y sus comorbilidades.<\/p>\n\n\n<div class=\"gb-container gb-container-a7adfe0e gb-accordion\">\n<div class=\"gb-container gb-container-0cc3e2ca gb-accordion__item\" data-transition=\"slide\">\n\n<button class=\"gb-button gb-button-b431b4b2 gb-accordion__toggle\"><span class=\"gb-button-text\"><strong>Registro de pacientes<\/strong><\/span><span class=\"gb-icon\"><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewbox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon\"><path d=\"M207.029 381.476L12.686 187.132c-9.373-9.373-9.373-24.569 0-33.941l22.667-22.667c9.357-9.357 24.522-9.375 33.901-.04L224 284.505l154.745-154.021c9.379-9.335 24.544-9.317 33.901.04l22.667 22.667c9.373 9.373 9.373 24.569 0 33.941L240.971 381.476c-9.373 9.372-24.569 9.372-33.942 0z\" fill=\"currentColor\"><\/path><\/svg><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewbox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon-open\"><path d=\"M240.971 130.524l194.343 194.343c9.373 9.373 9.373 24.569 0 33.941l-22.667 22.667c-9.357 9.357-24.522 9.375-33.901.04L224 227.495 69.255 381.516c-9.379 9.335-24.544 9.317-33.901-.04l-22.667-22.667c-9.373-9.373-9.373-24.569 0-33.941L207.03 130.525c9.372-9.373 24.568-9.373 33.941-.001z\" fill=\"currentColor\"><\/path><\/svg><\/span><\/button>\n\n\n<div class=\"gb-accordion__content\"><div class=\"gb-container gb-container-e175e643\">\n\n<p>El Registro de Pacientes con Tumores Cerebrales Hipotal\u00e1mico-Hipofisarios es un registro internacional en l\u00ednea para personas con tumores cerebrales hipotal\u00e1mico-hipofisarios raros. Est\u00e1 patrocinado por la Raymond A. Wood Foundation y alojado por la National Organization for Rare Disorders (NORD\u00ae) en su plataforma IAMRARE\u00ae. El registro recoge informaci\u00f3n de los participantes (o de sus cuidadores o representantes autorizados) afectados por tumores cerebrales hipotal\u00e1mico-hipofisarios raros. Esta informaci\u00f3n se utiliza para crear directrices de atenci\u00f3n, ayudar a los equipos asistenciales que prestan atenci\u00f3n a personas con tumores cerebrales hipotal\u00e1mico-hipofisarios o supervivientes de los mismos, y orientar la mejora de la calidad en los centros asistenciales.<\/p>\n\n\n\n<p><strong>Los investigadores tambi\u00e9n pueden utilizar el Registro para investigar.<\/strong> <strong>Los datos desidentificados y agregados del Registro se comparten con colaboradores acad\u00e9micos e industriales. <\/strong>realizar estudios retrospectivos o llevar a cabo investigaciones y\/o ensayos cl\u00ednicos sobre nuevas terapias. <strong><\/strong><\/p>\n\n\n\n<a class=\"gb-button gb-button-a2fd6f19 gb-button-text\" href=\"https:\/\/hptumorregistry.iamrare.org\/about\/for-researchers\/\" target=\"_blank\" rel=\"noopener noreferrer\">M\u00e1s informaci\u00f3n<\/a>\n\n\n\n<p><br><strong>Recibir informes peri\u00f3dicos de los datos procedentes del Registro, <\/strong><a href=\"mailto:registry@rawoodfoundation.org\">env\u00edenos un correo electr\u00f3nico.<\/a> <strong>Para m\u00e1s informaci\u00f3n<\/strong>, <a href=\"mailto:nathalie@rawoodfoundation.org\">correo electr\u00f3nico Nathalie Kayadjanian<\/a>Doctor, Asesor Cient\u00edfico.<\/p>\n\n<\/div><\/div>\n<\/div>\n\n<div class=\"gb-container gb-container-a1ecdca1 gb-accordion__item\" data-transition=\"slide\">\n\n<button class=\"gb-button gb-button-e9101395 gb-accordion__toggle\"><span class=\"gb-button-text\"><strong>Desarrollo de medidores de sodio de uso dom\u00e9stico<\/strong><\/span><span class=\"gb-icon\"><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewbox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon\"><path d=\"M207.029 381.476L12.686 187.132c-9.373-9.373-9.373-24.569 0-33.941l22.667-22.667c9.357-9.357 24.522-9.375 33.901-.04L224 284.505l154.745-154.021c9.379-9.335 24.544-9.317 33.901.04l22.667 22.667c9.373 9.373 9.373 24.569 0 33.941L240.971 381.476c-9.373 9.372-24.569 9.372-33.942 0z\" fill=\"currentColor\"><\/path><\/svg><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewbox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon-open\"><path d=\"M240.971 130.524l194.343 194.343c9.373 9.373 9.373 24.569 0 33.941l-22.667 22.667c-9.357 9.357-24.522 9.375-33.901.04L224 227.495 69.255 381.516c-9.379 9.335-24.544 9.317-33.901-.04l-22.667-22.667c-9.373-9.373-9.373-24.569 0-33.941L207.03 130.525c9.372-9.373 24.568-9.373 33.941-.001z\" fill=\"currentColor\"><\/path><\/svg><\/span><\/button>\n\n\n<div class=\"gb-accordion__content\"><div class=\"gb-container gb-container-d8020272\">\n\n<p>A principios de 2020, la Fundaci\u00f3n Raymond A. Wood comenz\u00f3 a explorar la viabilidad de desarrollar un medidor de sodio en sangre de uso dom\u00e9stico para ayudar en la gesti\u00f3n de los <a href=\"https:\/\/www.rawoodfoundation.org\/es\/control-de-la-diabetes-insipida\/\">AVP-D<\/a>sodio, una afecci\u00f3n en la que el organismo no puede regular el equilibrio de l\u00edquidos. En la actualidad, no hay forma de medir el sodio en sangre fuera de un laboratorio, lo que conlleva frecuentes y a menudo traum\u00e1ticas extracciones de sangre venosa a los pacientes, sobre todo a los ni\u00f1os.<\/p>\n\n\n\n<p>Con la colaboraci\u00f3n de profesionales m\u00e9dicos y el apoyo financiero de los NIH y la Fundaci\u00f3n Raymond A. Wood, la primera fase est\u00e1 actualmente en marcha. El dispositivo pretende ayudar a los pacientes a gestionar la AVP-D de forma proactiva, reduciendo la necesidad de visitas a urgencias y hospitalizaciones.<\/p>\n\n\n\n<a class=\"gb-button gb-button-57d3eb4f gb-button-text\" href=\"https:\/\/www.rawoodfoundation.org\/es\/medidor-de-sodio\/\">M\u00e1s informaci\u00f3n<\/a>\n\n<\/div><\/div>\n<\/div>\n\n<div class=\"gb-container gb-container-9e3a1c72 gb-accordion__item\" data-transition=\"slide\">\n\n<button class=\"gb-button gb-button-21ee1312 gb-accordion__toggle\"><span class=\"gb-button-text\"><strong><strong>Biorecursos<\/strong><\/strong><\/span><span class=\"gb-icon\"><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewbox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon\"><path d=\"M207.029 381.476L12.686 187.132c-9.373-9.373-9.373-24.569 0-33.941l22.667-22.667c9.357-9.357 24.522-9.375 33.901-.04L224 284.505l154.745-154.021c9.379-9.335 24.544-9.317 33.901.04l22.667 22.667c9.373 9.373 9.373 24.569 0 33.941L240.971 381.476c-9.373 9.372-24.569 9.372-33.942 0z\" fill=\"currentColor\"><\/path><\/svg><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewbox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon-open\"><path d=\"M240.971 130.524l194.343 194.343c9.373 9.373 9.373 24.569 0 33.941l-22.667 22.667c-9.357 9.357-24.522 9.375-33.901.04L224 227.495 69.255 381.516c-9.379 9.335-24.544 9.317-33.901-.04l-22.667-22.667c-9.373-9.373-9.373-24.569 0-33.941L207.03 130.525c9.372-9.373 24.568-9.373 33.941-.001z\" fill=\"currentColor\"><\/path><\/svg><\/span><\/button>\n\n\n<div class=\"gb-accordion__content\"><div class=\"gb-container gb-container-c9bfa06f\">\n\n<p>RAWF apoya la <strong>Red Infantil de Tumores Cerebrales (CBTN)<\/strong> que ha recogido tejido de tumores cerebrales y otras muestras biol\u00f3gicas de miembros de la CBTN y ha codesarrollado un conjunto de plataformas de datos basadas en la nube que permiten a los investigadores acceder a una rica colecci\u00f3n de datos sobre tumores cerebrales hipotal\u00e1mico-hipofisarios desde cualquier lugar del mundo. Esto ayudar\u00e1 a desarrollar nuevos estudios prometedores que apoyar\u00e1n la investigaci\u00f3n sobre tumores cerebrales hipotal\u00e1mico-hipofisarios y ayudar\u00e1n en el desarrollo y descubrimiento de f\u00e1rmacos.<\/p>\n\n\n\n<p>Las muestras biol\u00f3gicas se procesan y almacenan en el centro de operaciones de la CBTN, situado en el Hospital Infantil de Filadelfia. Posteriormente, los investigadores pueden solicitar estas muestras conservadas. Cada muestra recogida se empareja con diferentes tipos de datos, incluidos los datos cl\u00ednicos de las visitas de los pacientes, los datos de imagen de las resonancias magn\u00e9ticas, los datos histol\u00f3gicos de los portaobjetos te\u00f1idos de tejido, los datos gen\u00f3micos extra\u00eddos de la secuenciaci\u00f3n del genoma completo (WGS) con datos emparejados de RNAseq y datos prote\u00f3micos. Estos conjuntos de datos se revisan para comprobar su exactitud y se elimina de ellos cualquier informaci\u00f3n identificativa para proteger la privacidad de todos y cada uno de los sujetos de la investigaci\u00f3n.<\/p>\n\n\n\n<a class=\"gb-button gb-button-fa0d680d gb-button-text\" href=\"https:\/\/cbtn.org\/\" target=\"_blank\" rel=\"noopener noreferrer\">M\u00e1s informaci\u00f3n<\/a>\n\n<\/div><\/div>\n<\/div>\n\n<div class=\"gb-container gb-container-b3496b66 gb-accordion__item\" data-transition=\"slide\">\n\n<button class=\"gb-button gb-button-880b5acf gb-accordion__toggle\"><span class=\"gb-button-text\"><strong><strong>Grupo de trabajo sobre craneofaringioma<\/strong><\/strong><\/span><span class=\"gb-icon\"><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewbox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon\"><path d=\"M207.029 381.476L12.686 187.132c-9.373-9.373-9.373-24.569 0-33.941l22.667-22.667c9.357-9.357 24.522-9.375 33.901-.04L224 284.505l154.745-154.021c9.379-9.335 24.544-9.317 33.901.04l22.667 22.667c9.373 9.373 9.373 24.569 0 33.941L240.971 381.476c-9.373 9.372-24.569 9.372-33.942 0z\" fill=\"currentColor\"><\/path><\/svg><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewbox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon-open\"><path d=\"M240.971 130.524l194.343 194.343c9.373 9.373 9.373 24.569 0 33.941l-22.667 22.667c-9.357 9.357-24.522 9.375-33.901.04L224 227.495 69.255 381.516c-9.379 9.335-24.544 9.317-33.901-.04l-22.667-22.667c-9.373-9.373-9.373-24.569 0-33.941L207.03 130.525c9.372-9.373 24.568-9.373 33.941-.001z\" fill=\"currentColor\"><\/path><\/svg><\/span><\/button>\n\n\n<div class=\"gb-accordion__content\"><div class=\"gb-container gb-container-9a66b7b9\">\n\n<p>RAWF apoya al Grupo de Trabajo sobre Craneofaringioma del Consorcio de Neurooncolog\u00eda Pedi\u00e1trica (PNOC). Mediante esfuerzos de colaboraci\u00f3n internacional, el consorcio pretende investigar las bases moleculares del craneofaringioma y los mecanismos de recurrencia tumoral, la resistencia a los f\u00e1rmacos y las posibles v\u00edas abordables, as\u00ed como contribuir al desarrollo de nuevos modelos de la enfermedad del craneofaringioma para el ensayo de f\u00e1rmacos.<\/p>\n\n\n\n<a class=\"gb-button gb-button-3dc8db65 gb-button-text\" href=\"https:\/\/pnoc.us\/research-group\/craniopharyngioma\/\" target=\"_blank\" rel=\"noopener noreferrer\">M\u00e1s informaci\u00f3n<\/a>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>\u00daltimas investigaciones de RAWF <a>Noticias<\/a><\/strong><\/h3>\n\n\n\n<div class=\"gb-grid-wrapper gb-grid-wrapper-cadc9eff gb-query-loop-wrapper\">\n<div class=\"gb-grid-column gb-grid-column-85f61f9d gb-query-loop-item post-19433 post type-post status-publish format-standard has-post-thumbnail hentry category-advocacy category-latest-research gb-grid-column-horizontal_card\"><div class=\"gb-container gb-container-85f61f9d clickable-container gb-container-horizontal_card\">\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:40%\"><figure class=\"gb-block-image gb-block-image-cde99afd\"><img decoding=\"async\" width=\"488\" height=\"352\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/04\/Hy.png\" class=\"gb-image-cde99afd\" alt=\"Captura de pantalla del estudio publicado con el logotipo del Registro de Pacientes con Tumores Cerebrales Hipotal\u00e1mico-Hipofisarios\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/04\/Hy.png 488w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/04\/Hy-300x216.png 300w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/04\/Hy-18x12.png 18w\" sizes=\"(max-width: 488px) 100vw, 488px\" \/><\/figure><\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:60%\"><h2 class=\"gb-headline gb-headline-07c986f8 gb-headline-text\"><a href=\"https:\/\/www.rawoodfoundation.org\/es\/2026\/04\/01\/advancing-understanding-of-hyperphagia-in-cp\/\">Avances en la comprensi\u00f3n de la hiperfagia en la par\u00e1lisis cerebral<\/a><\/h2>\n\n<p class=\"gb-headline gb-headline-f8f7ec94 gb-headline-text\"><time class=\"entry-date published\" datetime=\"2026-04-01T15:22:18+00:00\">1 de abril de 2026<\/time><\/p>\n\n<div class=\"gb-headline gb-headline-3f77524f gb-headline-text\">Un nuevo estudio arroja luz sobre la hiperfagia en el craneofaringioma ...<\/div><\/div>\n<\/div>\n\n<\/div><\/div>\n\n<div class=\"gb-grid-column gb-grid-column-85f61f9d gb-query-loop-item post-19157 post type-post status-publish format-standard has-post-thumbnail hentry category-latest-research gb-grid-column-horizontal_card\"><div class=\"gb-container gb-container-85f61f9d clickable-container gb-container-horizontal_card\">\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:40%\"><figure class=\"gb-block-image gb-block-image-cde99afd\"><img decoding=\"async\" width=\"477\" height=\"326\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/03\/Treatment-Priorities-in-Craniopharyngioma-Perspectives-of-Survivors-and-Caregivers-1.png\" class=\"gb-image-cde99afd\" alt=\"\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/03\/Treatment-Priorities-in-Craniopharyngioma-Perspectives-of-Survivors-and-Caregivers-1.png 477w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/03\/Treatment-Priorities-in-Craniopharyngioma-Perspectives-of-Survivors-and-Caregivers-1-300x205.png 300w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/03\/Treatment-Priorities-in-Craniopharyngioma-Perspectives-of-Survivors-and-Caregivers-1-18x12.png 18w\" sizes=\"(max-width: 477px) 100vw, 477px\" \/><\/figure><\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:60%\"><h2 class=\"gb-headline gb-headline-07c986f8 gb-headline-text\"><a href=\"https:\/\/www.rawoodfoundation.org\/es\/2026\/03\/19\/treatment-priorities-in-craniopharyngioma\/\">Prioridades de tratamiento en el craneofaringioma: Perspectivas de supervivientes y cuidadores\u00a0<\/a><\/h2>\n\n<p class=\"gb-headline gb-headline-f8f7ec94 gb-headline-text\"><time class=\"entry-date published\" datetime=\"2026-03-19T10:00:00+00:00\">19 de marzo de 2026<\/time><\/p>\n\n<div class=\"gb-headline gb-headline-3f77524f gb-headline-text\">RAWF anuncia la publicaci\u00f3n del primer estudio de investigaci\u00f3n ...<\/div><\/div>\n<\/div>\n\n<\/div><\/div>\n\n<div class=\"gb-grid-column gb-grid-column-85f61f9d gb-query-loop-item post-14637 post type-post status-publish format-standard has-post-thumbnail hentry category-hypothalamic-obesity category-latest-research gb-grid-column-horizontal_card\"><div class=\"gb-container gb-container-85f61f9d clickable-container gb-container-horizontal_card\">\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:40%\"><figure class=\"gb-block-image gb-block-image-cde99afd\"><img decoding=\"async\" width=\"477\" height=\"326\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/07\/Copy-of-Copy-of-Blog-Post-Image.png\" class=\"gb-image-cde99afd\" alt=\"Imagen de medicamentos con el t\u00edtulo New Frontiers in Hypothalamic Obesity: Ensayos cl\u00ednicos esperanzadores\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/07\/Copy-of-Copy-of-Blog-Post-Image.png 477w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/07\/Copy-of-Copy-of-Blog-Post-Image-300x205.png 300w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/07\/Copy-of-Copy-of-Blog-Post-Image-18x12.png 18w\" sizes=\"(max-width: 477px) 100vw, 477px\" \/><\/figure><\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:60%\"><h2 class=\"gb-headline gb-headline-07c986f8 gb-headline-text\"><a href=\"https:\/\/www.rawoodfoundation.org\/es\/2025\/07\/16\/new-frontiers-in-hypothalamic-obesity-research\/\">Nuevas fronteras en la investigaci\u00f3n de la obesidad hipotal\u00e1mica<\/a><\/h2>\n\n<p class=\"gb-headline gb-headline-f8f7ec94 gb-headline-text\"><time class=\"entry-date published\" datetime=\"2025-07-16T14:48:43+00:00\">16 de julio de 2025<\/time><\/p>\n\n<div class=\"gb-headline gb-headline-3f77524f gb-headline-text\">Ensayos cl\u00ednicos actuales y datos reci\u00e9n publicados que ofrecen esperanzas ...<\/div><\/div>\n<\/div>\n\n<\/div><\/div>\n\n<div class=\"gb-grid-column gb-grid-column-85f61f9d gb-query-loop-item post-14049 post type-post status-publish format-standard has-post-thumbnail hentry category-latest-research category-rawf-news gb-grid-column-horizontal_card\"><div class=\"gb-container gb-container-85f61f9d clickable-container gb-container-horizontal_card\">\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:40%\"><figure class=\"gb-block-image gb-block-image-cde99afd\"><img decoding=\"async\" width=\"1024\" height=\"768\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/06\/image005.jpg\" class=\"gb-image-cde99afd\" alt=\"Imagen de grupo del curso de postgrado en craneofaringioma infantil\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/06\/image005.jpg 1024w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/06\/image005-300x225.jpg 300w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/06\/image005-768x576.jpg 768w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/06\/image005-16x12.jpg 16w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure><\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:60%\"><h2 class=\"gb-headline gb-headline-07c986f8 gb-headline-text\"><a href=\"https:\/\/www.rawoodfoundation.org\/es\/2025\/06\/24\/cp-convening\/\">Expertos internacionales se re\u00fanen en Denver para el 8\u00ba Curso de Postgrado en Craneofaringioma Infantil<\/a><\/h2>\n\n<p class=\"gb-headline gb-headline-f8f7ec94 gb-headline-text\"><time class=\"entry-date published\" datetime=\"2025-06-24T16:56:43+00:00\">24 de junio de 2025<\/time><\/p>\n\n<div class=\"gb-headline gb-headline-3f77524f gb-headline-text\">El 8\u00ba Curso de Postgrado en Craneofaringioma Infantil (CP) tuvo ...<\/div><\/div>\n<\/div>\n\n<\/div><\/div>\n<\/div>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<p><a id=\"_msocom_1\"><\/a><\/p>\n\n\n<div class=\"gb-container gb-container-98493386\">\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:33.33%\">\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" width=\"1024\" height=\"610\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/05\/image-4-1024x610.jpg\" alt=\"M\u00e9dicos que revisan las im\u00e1genes\" class=\"wp-image-5875\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/05\/image-4-1024x610.jpg 1024w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/05\/image-4-300x179.jpg 300w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/05\/image-4-768x457.jpg 768w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/05\/image-4-18x12.jpg 18w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/05\/image-4.jpg 1196w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<h3 class=\"wp-block-heading\">P\u00f3ngase en contacto con nosotros<\/h3>\n\n\n\n<p>Si tiene alguna pregunta o necesita m\u00e1s ayuda, nuestro equipo est\u00e1 aqu\u00ed para apoyarle en sus esfuerzos de investigaci\u00f3n. Si necesita informaci\u00f3n detallada sobre los tumores cerebrales hipotal\u00e1mico-hipofisarios o m\u00e1s informaci\u00f3n sobre nuestros recursos y servicios disponibles, p\u00f3ngase en contacto con nosotros. P\u00f3ngase en contacto con nosotros directamente por tel\u00e9fono, correo electr\u00f3nico o a trav\u00e9s de nuestro formulario de contacto en l\u00ednea, y responderemos con prontitud a sus consultas....<\/p>\n\n\n\n<p class=\"gb-headline gb-headline-1207c705 round-icon\"><span class=\"gb-icon\"><svg aria-hidden=\"true\" role=\"img\" height=\"1em\" width=\"1em\" viewbox=\"0 0 256 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path fill=\"currentColor\" d=\"M224.3 273l-136 136c-9.4 9.4-24.6 9.4-33.9 0l-22.6-22.6c-9.4-9.4-9.4-24.6 0-33.9l96.4-96.4-96.4-96.4c-9.4-9.4-9.4-24.6 0-33.9L54.3 103c9.4-9.4 24.6-9.4 33.9 0l136 136c9.5 9.4 9.5 24.6.1 34z\"><\/path><\/svg><\/span><span class=\"gb-headline-text\"><a href=\"https:\/\/www.rawoodfoundation.org\/es\/pongase-en-contacto-con\/\">P\u00f3ngase en contacto<\/a><\/span><\/p>\n<\/div>\n<\/div>\n\n<\/div>","protected":false},"excerpt":{"rendered":"<p>Recursos para avanzar en la investigaci\u00f3n de los tumores cerebrales hipotal\u00e1mico-hipofisarios En la Fundaci\u00f3n Raymond A. Wood ... <a title=\"Para investigadores\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/es\/for-researchers\/\" aria-label=\"Leer m\u00e1s sobre Para investigadores\">Seguir leyendo<\/a><\/p>","protected":false},"author":4,"featured_media":0,"parent":0,"menu_order":27,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":{"0":"post-9335","1":"page","2":"type-page","3":"status-publish","5":"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>For Researchers - Raymond A. 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