{"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-fundacion-raymond-a-wood-y-nord-lanzan-un-estudio-sobre-la-historia-natural-de-los-tumores-cerebrales-hipotalamicos-hipofisarios-raros","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2024\/05\/16\/the-raymond-a-wood-foundation-and-nord-launch-natural-history-study-of-rare-hypothalamic-pituitary-brain-tumors\/","title":{"rendered":"La Fundaci\u00f3n Raymond A. Wood y NORD\u00ae lanzan un estudio sobre la historia natural de los tumores cerebrales hipotal\u00e1mico-hipofisarios poco frecuentes."},"content":{"rendered":"<h2 class=\"wp-block-heading\">El estudio de investigaci\u00f3n est\u00e1 abierto a participantes de todo el mundo para avanzar en la comprensi\u00f3n y los tratamientos de estas enfermedades raras<\/h2>\n\n\n\n<p>Hoy se pone en marcha un innovador estudio de la Fundaci\u00f3n Raymond A. Wood en colaboraci\u00f3n con la National Organization for Rare Disorders (NORD\u00ae), cuyo objetivo es investigar los tumores cerebrales hipotal\u00e1mico-hipofisarios poco frecuentes. Estos tumores pueden provocar una serie de s\u00edntomas debilitantes, como d\u00e9ficits hormonales, deficiencias visuales, problemas psicosociales, deterioro cognitivo y disfunci\u00f3n hipotal\u00e1mica, que provoca desregulaci\u00f3n de la temperatura, problemas de sue\u00f1o, obesidad e hiperfagia.<\/p>\n\n\n\n<p>El Registro de Pacientes con Tumores Cerebrales Hipotal\u00e1mico-Hipofisarios establece una plataforma mundial para que las personas afectadas por estos tumores poco frecuentes compartan informaci\u00f3n vital. Su principal objetivo es crear un recurso internacional que impulse la investigaci\u00f3n cient\u00edfica futura en este campo. Los tumores cerebrales hipotal\u00e1mico-hipofisarios, que se dan en aproximadamente uno de cada mill\u00f3n de personas, plantean retos complejos y su tratamiento suele consistir en la resecci\u00f3n quir\u00fargica con o sin radioterapia. Las manifestaciones cl\u00ednicas var\u00edan mucho, dependiendo de factores como la localizaci\u00f3n del tumor, su tama\u00f1o, su patr\u00f3n de crecimiento y su relaci\u00f3n con las estructuras cerebrales adyacentes.<\/p>\n\n\n\n<p>Amy Wood, cofundadora y directora ejecutiva de la Fundaci\u00f3n Raymond A. Wood, destac\u00f3 la importancia de esta iniciativa: \"Este recurso mundial proporcionar\u00e1 datos a los investigadores para avanzar en el desarrollo de f\u00e1rmacos y tratamientos, centrados en las necesidades de los pacientes para ayudar a mejorar la atenci\u00f3n a nuestros seres queridos.\"<\/p>\n\n\n\n<p>Para concienciar y fomentar la participaci\u00f3n, la Fundaci\u00f3n Raymond A. Wood pondr\u00e1 en marcha un amplio plan de lanzamiento que incluir\u00e1 una campa\u00f1a en las redes sociales, seminarios web y actos.<\/p>\n\n\n\n<p>\"El \u00e9xito del registro depende de la participaci\u00f3n de la comunidad. Nuestro objetivo es inscribir al mayor n\u00famero posible de pacientes, padres o tutores legales\", dijo Wood.<\/p>\n\n\n\n<p>El Registro de Pacientes de Tumores Cerebrales Hipotal\u00e1mico-Hipofisarios es un estudio exhaustivo de la historia natural que comprende encuestas electr\u00f3nicas dise\u00f1adas para recopilar informaci\u00f3n sobre la experiencia de los pacientes y la evoluci\u00f3n de la enfermedad. Los pacientes, junto con sus cuidadores o tutores, pueden introducir datos desde cualquier lugar del mundo. Toda la informaci\u00f3n es confidencial y se almacena de forma segura en el portal en l\u00ednea IAMRARE. La Fundaci\u00f3n Raymond A. Wood puede compartir los datos con personas o instituciones que lleven a cabo investigaciones o ensayos cl\u00ednicos, previa aprobaci\u00f3n del consejo rector del estudio, que incluye a cient\u00edficos, m\u00e9dicos y defensores de los pacientes.<\/p>\n\n\n\n<p>La Fundaci\u00f3n Raymond A. Wood y NORD han unido sus fuerzas en este esfuerzo, aprovechando la experiencia de NORD en plataformas de estudio de historia natural como parte de su misi\u00f3n colectiva de abordar las 7.000 enfermedades raras.<\/p>\n\n\n\n<p>\"NORD est\u00e1 encantada de ver el lanzamiento de este nuevo e importante estudio de historia natural. Esta investigaci\u00f3n innovadora y cr\u00edtica no podr\u00eda llegar en mejor momento para los miembros de la comunidad de tumores cerebrales hipotal\u00e1mico-hipofisarios. Junto con NORD, este nuevo esfuerzo de investigaci\u00f3n puede elevar las voces cr\u00edticas y las historias de los pacientes, familias y miembros de la comunidad de enfermedades raras\", dijo Aliza Fink, DSc Directora de Investigaci\u00f3n de Datos y An\u00e1lisis, NORD.<\/p>\n\n\n\n<p><a href=\"https:\/\/www.rawoodfoundation.org\/es\/hptumorregistry\/\">\u00danase al registro o inf\u00f3rmese sobre este proyecto.<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>El estudio de investigaci\u00f3n est\u00e1 abierto a participantes de todo el mundo para avanzar en la comprensi\u00f3n y los tratamientos de estas enfermedades raras ... <a title=\"La Fundaci\u00f3n Raymond A. Wood y NORD\u00ae lanzan un estudio sobre la historia natural de los tumores cerebrales hipotal\u00e1mico-hipofisarios poco frecuentes.\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/es\/2024\/05\/16\/the-raymond-a-wood-foundation-and-nord-launch-natural-history-study-of-rare-hypothalamic-pituitary-brain-tumors\/\" aria-label=\"Leer m\u00e1s sobre La Fundaci\u00f3n Raymond A. Wood y NORD\u00ae lanzan un estudio sobre la historia natural de los tumores cerebrales hipotal\u00e1mico-hipofisarios raros.\">Seguir leyendo<\/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\/es\/2024\/05\/16\/la-fundacion-raymond-a-wood-y-nord-lanzan-un-estudio-sobre-la-historia-natural-de-los-tumores-cerebrales-hipotalamicos-hipofisarios-raros\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\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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