{"id":12050,"date":"2025-03-17T18:29:00","date_gmt":"2025-03-17T18:29:00","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=12050"},"modified":"2025-05-05T17:02:50","modified_gmt":"2025-05-05T17:02:50","slug":"estudio-de-fatiga","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2025\/03\/17\/fatigue-study\/","title":{"rendered":"Nuevo estudio sobre la fatiga en supervivientes de craneofaringioma"},"content":{"rendered":"<h2 class=\"wp-block-heading\">La Fundaci\u00f3n Raymond A. Wood y Rhythm Pharmaceuticals se asocian para estudiar la fatiga en supervivientes de craneofaringioma<\/h2>\n\n\n\n<p>La fatiga es uno de los s\u00edntomas m\u00e1s dif\u00edciles y menos comprendidos que experimentan los supervivientes de craneofaringioma y otros tumores cerebrales hipotal\u00e1mico-hipofisarios. Como parte de nuestro compromiso de mejorar la calidad de vida de los supervivientes, la Fundaci\u00f3n Raymond A. Wood se enorgullece de anunciar una nueva colaboraci\u00f3n de investigaci\u00f3n con Rhythm Pharmaceuticals para estudiar el impacto de la fatiga en esta poblaci\u00f3n de pacientes.<\/p>\n\n\n\n<p>Este estudio se llevar\u00e1 a cabo a trav\u00e9s de nuestro Registro de Pacientes con Tumores Cerebrales Hipotal\u00e1mico-Hipofisarios, que recoge datos directamente de pacientes y cuidadores para comprender mejor los efectos a largo plazo de estos tumores poco frecuentes.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Por qu\u00e9 es importante este estudio<\/h3>\n\n\n\n<p>Los supervivientes de craneofaringioma a menudo experimentan una profunda fatiga, que puede afectar significativamente a su vida diaria. En la fatiga pueden influir factores como el aumento de peso, la alteraci\u00f3n de los patrones de sue\u00f1o y la disfunci\u00f3n hipotal\u00e1mica, pero se ha investigado poco sobre sus causas y posibles tratamientos.<\/p>\n\n\n\n<p>El Dr. David Meeker, Presidente, Consejero Delegado y Presidente de Rhythm Pharmaceuticals, destac\u00f3 la importancia de los datos aportados por los pacientes para mejorar la atenci\u00f3n a los supervivientes:<\/p>\n\n\n\n<p>\"Estamos encantados de asociarnos con la Fundaci\u00f3n Raymond A. Wood en esta encuesta para aprender m\u00e1s sobre la fatiga y sus efectos relacionados con los craneofaringiomas. Aprender directamente de los pacientes y cuidadores es importante para avanzar en nuestra comprensi\u00f3n de los craneofaringiomas y la fatiga y las consecuencias para mejorar la atenci\u00f3n a los pacientes.\"<\/p>\n\n\n\n<p>Como organizaci\u00f3n de defensa del paciente, reconocemos que la fatiga es algo m\u00e1s que estar cansado: es un s\u00edntoma que altera la vida y puede afectar a la funci\u00f3n cognitiva, el bienestar emocional y la capacidad para realizar las actividades cotidianas.<\/p>\n\n\n\n<p>\"Nos complace unirnos a Rhythm en este esfuerzo por comprender mejor las experiencias de los supervivientes de craneofaringioma con la fatiga y los factores que pueden afectarla, como el aumento de peso y la somnolencia diurna\", declar\u00f3 Amy Wood, directora ejecutiva de la Fundaci\u00f3n Raymond A. Wood.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">\u00bfQui\u00e9n puede participar?<\/h3>\n\n\n\n<p>Todos <strong>supervivientes de craneofaringioma<\/strong> o <strong>sus cuidadores<\/strong> pueden participar en este estudio. Se entregar\u00e1 una tarjeta regalo Visa $50 a quienes completen las encuestas.<\/p>\n\n\n\n<p>Si a\u00fan no est\u00e1 inscrito en el <strong>Registro de pacientes con tumores cerebrales hipotal\u00e1mico-hipofisarios<\/strong>puede <strong>inscr\u00edbete hoy<\/strong> y complete la encuesta.<\/p>\n\n\n\n<p>\ud83d\udd17 <strong>\u00danase al registro aqu\u00ed:<\/strong> <a href=\"https:\/\/www.rawoodfoundation.org\/es\/hptumorregistry\/\">www.rawoodfoundation.org\/hptumorregistry<\/a><\/p>\n\n\n\n<p>Si ya formas parte del registro, con\u00e9ctate y completa la encuesta en:<\/p>\n\n\n\n<p>\ud83d\udd17 <a href=\"https:\/\/hptumorregistry.iamrare.org\/\">https:\/\/hptumorregistry.iamrare.org\/<\/a><\/p>\n\n\n\n<p>Si tiene preguntas relacionadas con el estudio, p\u00f3ngase en contacto con <strong><a>registry@rawoodfoundation.org<\/a><\/strong>.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Avanzar en la investigaci\u00f3n para la comunidad del craneofaringioma<\/h3>\n\n\n\n<p>En el <strong>Fundaci\u00f3n Raymond A. Wood<\/strong>nos comprometemos a <strong>salvar la brecha entre las experiencias de los pacientes y la investigaci\u00f3n cient\u00edfica<\/strong>. Esta colaboraci\u00f3n con Rhythm Pharmaceuticals es un paso fundamental para abordar <strong>fatiga<\/strong>uno de los problemas m\u00e1s debilitantes y olvidados a los que se enfrentan los supervivientes de un craneofaringioma.<\/p>\n\n\n\n<p>Animamos a todos los pacientes y cuidadores a participar.<strong>su voz es importante para el futuro de la asistencia y la investigaci\u00f3n<\/strong>.<\/p>\n\n\n\n<p>Mant\u00e9ngase al tanto de las novedades a medida que avancemos en este importante estudio.<\/p>\n\n\n\n<figure class=\"gb-block-image gb-block-image-2df79cb1\"><img decoding=\"async\" width=\"1000\" height=\"1000\" class=\"gb-image gb-image-2df79cb1\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/03\/Rhythm-FatigueStudyGraphic.png\" alt=\"Imagen del cartel\" title=\"Ritmo-FatigaEstudioGr\u00e1fico\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/03\/Rhythm-FatigueStudyGraphic.png 1000w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/03\/Rhythm-FatigueStudyGraphic-300x300.png 300w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/03\/Rhythm-FatigueStudyGraphic-150x150.png 150w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/03\/Rhythm-FatigueStudyGraphic-768x768.png 768w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/03\/Rhythm-FatigueStudyGraphic-12x12.png 12w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/03\/Rhythm-FatigueStudyGraphic-330x330.png 330w\" sizes=\"(max-width: 1000px) 100vw, 1000px\" \/><\/figure>","protected":false},"excerpt":{"rendered":"<p>La Fundaci\u00f3n Raymond A. Wood y Rhythm Pharmaceuticals se asocian para estudiar la fatiga en supervivientes de craneofaringioma ... <a title=\"Nuevo estudio sobre la fatiga en supervivientes de craneofaringioma\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/es\/2025\/03\/17\/fatigue-study\/\" aria-label=\"Leer m\u00e1s sobre Nuevo estudio sobre la fatiga en supervivientes de craneofaringioma\">Seguir leyendo<\/a><\/p>","protected":false},"author":6,"featured_media":12052,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[20,1],"tags":[],"class_list":["post-12050","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-latest-research","category-uncategorized","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>New Study on Fatigue in Craniopharyngioma Survivors - 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\/2025\/03\/17\/estudio-de-fatiga\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"New Study on Fatigue in Craniopharyngioma Survivors - Raymond A. Wood Foundation\" \/>\n<meta property=\"og:description\" content=\"Raymond A. Wood Foundation and Rhythm Pharmaceuticals Partner to Study Fatigue in Craniopharyngioma Survivors Fatigue ... Read more\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.rawoodfoundation.org\/es\/2025\/03\/17\/estudio-de-fatiga\/\" \/>\n<meta property=\"og:site_name\" content=\"Raymond A. 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