{"id":158,"date":"2023-04-26T16:53:54","date_gmt":"2023-04-26T16:53:54","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2023\/04\/26\/2023-4-26-development-of-patient-registry-well-underway\/"},"modified":"2025-12-22T10:49:58","modified_gmt":"2025-12-22T10:49:58","slug":"2023-4-26-el-desarrollo-del-registro-de-pacientes-esta-en-marcha","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2023\/04\/26\/2023-4-26-development-of-patient-registry-well-underway\/","title":{"rendered":"El desarrollo del registro de pacientes est\u00e1 muy avanzado"},"content":{"rendered":"<div class=\"image-block-outer-wrapper          layout-caption-below          design-layout-inline          combination-animation-none          individual-animation-none          individual-text-animation-none\" data-test=\"image-block-inline-outer-wrapper\"><\/p>\n<figure class=\"sqs-block-image-figure              intrinsic\" style=\"max-width: 1770px;\"><\/p>\n<div class=\"image-block-wrapper\" data-animation-role=\"image\">\n<div class=\"sqs-image-shape-container-element              has-aspect-ratio\" style=\"position: relative; padding-bottom: 62.598873138427734%; overflow: hidden; -webkit-mask-image: -webkit-radial-gradient(white, black);\"><\/p>\n<\/div>\n<\/div>\n<\/figure>\n<\/div>\n<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space: pre-wrap;\">La Fundaci\u00f3n Raymond A. Wood ha acogido hoy la primera reuni\u00f3n de la junta consultiva del Registro Internacional de Pacientes de Tumores Cerebrales Hipotal\u00e1mico-Hipofisarios, dirigida por la directora cient\u00edfica, Nathalie Kayadjanian. La creaci\u00f3n de un registro de pacientes es una de las prioridades de investigaci\u00f3n descritas en el plan estrat\u00e9gico de investigaci\u00f3n de la RAWF publicado el a\u00f1o pasado.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">El objetivo de este registro es crear un repositorio central internacional de datos introducidos por cuidadores y pacientes sobre la vida con s\u00edndromes tumorales hipotal\u00e1mico-hipofisarios y conectar con otros registros de datos y biobancos existentes. La junta asesora participa en la planificaci\u00f3n inicial del registro, asesora sobre el desarrollo de encuestas y protocolos, garantiza la calidad de los datos, revisa cualquier problema notificado o violaci\u00f3n de la confidencialidad para asegurarse de que se notifique y resuelva adecuadamente y revisa los datos agregados del registro y el uso del registro, revisa todas las solicitudes de datos para asegurarse de que el proyecto propuesto tiene m\u00e9rito cient\u00edfico y ser\u00e1 valioso para la comunidad, y es responsable de decidir qu\u00e9 datos espec\u00edficos se entregar\u00e1n a los investigadores.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Entre los miembros de la junta del registro hay investigadores, m\u00e9dicos, socios de la industria, representantes de organizaciones de pacientes de enfermedades raras, supervivientes y cuidadores.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\"><strong>Johan de Graaf<br \/>\n<\/strong>Superviviente y Presidenta de la Fundaci\u00f3n Pituitaria Holandesa<br \/>\nPa\u00edses Bajos<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\"><strong>Lynne Mathies<br \/>\n<\/strong>Superviviente y estudiante del M\u00e1ster en Neurociencia y Cognici\u00f3n<br \/>\nUniversidad de Utrech, Pa\u00edses Bajos<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\"><strong>Dr. Hermann Muller<br \/>\n<\/strong>Jefe del Departamento de Pediatr\u00eda y Pediatr\u00eda<br \/>\nHematolog\u00eda y Oncolog\u00eda<br \/>\nKlinikum Oldenburg, Alemania<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\"><strong>Soma Sengupta, MD, PhD, FRCP<br \/>\n<\/strong>C\u00e1tedra Harold C, Schott de Investigaci\u00f3n de Tumores Cerebrales y<br \/>\nCodirector de Neurociencia del Gardner de la Universidad de Cincinnati, EE.UU.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\"><strong>Doctor Shuang Liu<br \/>\n<\/strong>Consejero Delegado y Fundador<br \/>\nConSynance Therapeutics Inc, EE.UU.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\"><strong>Shana McCormack MD, MTR<br \/>\n<\/strong>Director Cient\u00edfico del Centro Neuroendocrino<br \/>\nDivisi\u00f3n de Endocrinolog\u00eda y Diabetes<br \/>\nHospital Infantil de Filadelfia, EE.UU.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\"><strong>Doctor Bradley Richards<br \/>\n<\/strong>Cuidadora, profesora adjunta, Universidad de York<br \/>\nToronto, Canad\u00e1<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\"><strong>Doctora Theresa Strong<br \/>\n<\/strong>Director de Programas de Investigaci\u00f3n<br \/>\nFundaci\u00f3n para la Investigaci\u00f3n de Prader-Willi, EE.UU.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Los objetivos del registro de pacientes son los siguientes<\/p>\n<ul data-rte-list=\"default\">\n<li>\n<p class=\"\" style=\"white-space: pre-wrap;\">Apoyar y acelerar la inscripci\u00f3n en ensayos cl\u00ednicos<\/p>\n<\/li>\n<li>\n<p class=\"\" style=\"white-space: pre-wrap;\">Recopilar datos basados en pruebas sobre los puntos de vista y las necesidades insatisfechas de los supervivientes y los cuidadores sobre el impacto de la enfermedad y los tratamientos en su calidad de vida, las prioridades de tratamiento y la evaluaci\u00f3n de beneficios y riesgos.<\/p>\n<\/li>\n<li>\n<p class=\"\" style=\"white-space: pre-wrap;\">Comprender mejor todo el espectro de s\u00edntomas, epidemiolog\u00eda y progresi\u00f3n de la H-P (historia natural).<\/p>\n<\/li>\n<li>\n<p class=\"\" style=\"white-space: pre-wrap;\">Mejorar la atenci\u00f3n al paciente<\/p>\n<\/li>\n<li>\n<p class=\"\" style=\"white-space: pre-wrap;\">Facilitar la investigaci\u00f3n<\/p>\n<\/li>\n<\/ul>\n<p class=\"\" style=\"white-space: pre-wrap;\">El Registro Internacional de Tumores Cerebrales Hipotal\u00e1mico-Hipofisarios se construir\u00e1 y lanzar\u00e1 en la plataforma I Am Rare de la National Organization for Rare Disorders con un plan de lanzamiento para principios del oto\u00f1o de 2023.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Le invitamos a considerar <a href=\"https:\/\/www.rawoodfoundation.org\/es\/hacer-un-donativo\/\">hacer un regalo<\/a> para apoyar esta importante investigaci\u00f3n e impulsar nuestra misi\u00f3n de mejorar los resultados de estos supervivientes de tumores cerebrales poco frecuentes.<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>La Fundaci\u00f3n Raymond A. Wood acogi\u00f3 la primera reuni\u00f3n consultiva del Registro Internacional de Pacientes con Tumores Cerebrales Hipotal\u00e1mico-Hipofisarios ... <a title=\"El desarrollo del registro de pacientes est\u00e1 muy avanzado\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/es\/2023\/04\/26\/2023-4-26-development-of-patient-registry-well-underway\/\" aria-label=\"Leer m\u00e1s sobre Avanza a buen ritmo el desarrollo del Registro de Pacientes\">Seguir leyendo<\/a><\/p>","protected":false},"author":6,"featured_media":159,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[48,20,30,1],"tags":[],"class_list":["post-158","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-hypopituitarism","category-latest-research","category-rawf-news","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>Development of Patient Registry Well Underway - Raymond A. 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