{"id":9395,"date":"2024-08-07T17:16:08","date_gmt":"2024-08-07T17:16:08","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=9395"},"modified":"2024-08-07T20:42:27","modified_gmt":"2024-08-07T20:42:27","slug":"seguridad-reglamentaria","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2024\/08\/07\/regsitry-security\/","title":{"rendered":"Comprender la seguridad de los datos en el registro de pacientes con tumores cerebrales hipotal\u00e1mico-hipofisarios"},"content":{"rendered":"<p>Cuando se trata de compartir informaci\u00f3n sanitaria personal, la preocupaci\u00f3n por la seguridad de los datos es primordial, especialmente entre la comunidad de pacientes. Aqu\u00ed, en la Fundaci\u00f3n Raymond A. Wood, damos prioridad a la seguridad y privacidad de sus datos. Queremos asegurarle que el Registro de Pacientes con Tumores Cerebrales Hipotal\u00e1mico-Hipofisarios es una plataforma segura alojada en la plataforma de la National Organization for Rare Disorders (NORD). Este registro se adhiere a estrictas directrices gubernamentales para garantizar la m\u00e1xima protecci\u00f3n de la informaci\u00f3n de los pacientes.<\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"Garantizar la seguridad de los datos en el registro de pacientes con tumores cerebrales hipotal\u00e1mico-hipofisarios\" width=\"1200\" height=\"675\" src=\"https:\/\/www.youtube.com\/embed\/muwXWbRPiaU?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<h4 class=\"wp-block-heading\">C\u00f3mo garantizamos la seguridad de los datos<\/h4>\n\n\n\n<p>La plataforma cumple varias normativas fundamentales sobre privacidad y seguridad de datos, entre ellas:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Legislaci\u00f3n estadounidense sobre confidencialidad de la informaci\u00f3n sanitaria<\/strong>: HIPAA, HITECH y FISMA<\/li>\n\n\n\n<li><strong>Legislaci\u00f3n estatal sobre protecci\u00f3n de datos<\/strong>: Si procede<\/li>\n\n\n\n<li><strong>Normativa de la FDA sobre registros electr\u00f3nicos<\/strong>: 21CFR Parte 11<\/li>\n\n\n\n<li><strong>Directiva de datos de la Uni\u00f3n Europea y Reglamento general de protecci\u00f3n de datos (RGPD)<\/strong><\/li>\n<\/ul>\n\n\n\n<p>Desde que NORD puso en marcha su primer registro de pacientes en 2014, ha albergado m\u00e1s de 60 registros sin que se haya producido ni una sola filtraci\u00f3n de datos o incidente que haya puesto en peligro la seguridad de los datos de los participantes.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\">Aprobaci\u00f3n del Consejo Regulador Institucional<\/h4>\n\n\n\n<p>El protocolo y los procedimientos del Registro de Pacientes con Tumores Cerebrales Hipotal\u00e1mico-Hipofisarios han sido revisados y aprobados por una Junta Reguladora Institucional (IRB, por sus siglas en ingl\u00e9s), espec\u00edficamente la Junta de Revisi\u00f3n North Star. Esta revisi\u00f3n garantiza que todas las investigaciones con seres humanos se lleven a cabo de acuerdo con las directrices federales, institucionales y \u00e9ticas.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\">Cifrado y medidas de seguridad de los datos<\/h4>\n\n\n\n<p>La plataforma emplea HTTPS para garantizar que los datos se encriptan cuando se transmiten desde su navegador a los servidores de NORD. Adem\u00e1s, los datos almacenados en la base de datos de NORD (datos en reposo) est\u00e1n cifrados. Todas las comunicaciones entre el servidor de aplicaciones de la plataforma de registro y la base de datos tambi\u00e9n est\u00e1n cifradas. Aunque cualquier informaci\u00f3n electr\u00f3nica conlleva un riesgo m\u00ednimo de que la privacidad se vea comprometida, las s\u00f3lidas medidas de seguridad implantadas minimizan significativamente este riesgo.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\">Desidentificaci\u00f3n e intercambio de datos<\/h4>\n\n\n\n<p>La informaci\u00f3n que usted proporciona est\u00e1 desidentificada, lo que significa que se elimina toda la informaci\u00f3n sanitaria personal (PHI) y los datos se agregan a los de otros participantes. Normalmente, s\u00f3lo se comparten datos no identificados con investigadores, empresas que desarrollan tratamientos u otras partes. En casos excepcionales en los que la investigaci\u00f3n no pueda llevarse a cabo sin la PHI, dichos datos s\u00f3lo se compartir\u00e1n previa aprobaci\u00f3n del consejo asesor del registro, de acuerdo con los protocolos aprobados por el IRB.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\">Importancia de la exactitud de los datos personales<\/h4>\n\n\n\n<p>Es fundamental introducir correctamente los datos personales. El formulario de consentimiento para la participaci\u00f3n es un documento legal que debe firmarse con su nombre real. La exactitud de los datos garantiza que los resultados de la investigaci\u00f3n sean fiables, permitiendo que las voces de los pacientes y cuidadores sean escuchadas con credibilidad por los profesionales sanitarios, los cient\u00edficos y las agencias reguladoras. La informaci\u00f3n incorrecta, como una fecha de nacimiento inexacta, puede poner en peligro la creaci\u00f3n de n\u00fameros de identificaci\u00f3n cruciales como CRID o GUID, que vinculan la informaci\u00f3n m\u00e9dica entre diferentes bases de datos sin compartir informaci\u00f3n sanitaria personal.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\">Almacenamiento y propiedad de los datos<\/h4>\n\n\n\n<p>NORD almacena los datos de registro de patrocinadores y participantes en servidores cifrados en Canad\u00e1, con copias de seguridad peri\u00f3dicas. Estos servidores cumplen las normas del sector y se ajustan a la normativa estadounidense e internacional, incluida la GDPR. Los datos son propiedad de la Raymond A. Wood Foundation, que decide c\u00f3mo y con qui\u00e9n compartirlos. El personal de NORD accede a los datos \u00fanicamente para el soporte y mantenimiento de la plataforma.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\">Acceso a la informaci\u00f3n sanitaria protegida (PHI)<\/h4>\n\n\n\n<p>El acceso a la PHI est\u00e1 limitado a los miembros aprobados del equipo de investigaci\u00f3n y al personal de NORD, si se necesita apoyo t\u00e9cnico y con permiso del personal del registro. Todas las solicitudes de datos son evaluadas por el Consejo Asesor del Registro, garantizando que los investigadores reciban \u00fanicamente los datos m\u00ednimos necesarios para sus estudios.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\">Consideraciones sobre el GDPR<\/h4>\n\n\n\n<p>Para nuestros participantes en la Uni\u00f3n Europea y Suiza, ofrecemos las mismas protecciones de privacidad que en Estados Unidos, junto con derechos adicionales en virtud del GDPR. Estos incluyen el derecho a acceder, rectificar o borrar datos personales, recibir datos en un formato port\u00e1til, restringir o retirar el consentimiento para el tratamiento de datos y presentar reclamaciones ante las autoridades de supervisi\u00f3n.<\/p>\n\n\n\n<p>Para obtener informaci\u00f3n m\u00e1s detallada, visite la secci\u00f3n de preguntas frecuentes de <a href=\"https:\/\/www.rawoodfoundation.org\/es\/hptumorregistry\/\">Registro de pacientes con tumores cerebrales hipotal\u00e1mico-hipofisarios<\/a> de este sitio web. Su privacidad y confianza son de suma importancia para nosotros, y nos comprometemos a salvaguardar su informaci\u00f3n.<\/p>","protected":false},"excerpt":{"rendered":"<p>Cuando se trata de compartir informaci\u00f3n sanitaria personal, la preocupaci\u00f3n por la seguridad de los datos es primordial, especialmente ... <a title=\"Comprender la seguridad de los datos en el registro de pacientes con tumores cerebrales hipotal\u00e1mico-hipofisarios\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/es\/2024\/08\/07\/regsitry-security\/\" aria-label=\"Leer m\u00e1s sobre La seguridad de los datos en el registro de pacientes con tumores cerebrales hipotal\u00e1mico-hipofisarios\">Seguir leyendo<\/a><\/p>","protected":false},"author":6,"featured_media":9396,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[20],"tags":[],"class_list":["post-9395","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","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>Understanding Data Security in the Hypothalamic-Pituitary Brain Tumors Patient Registry - Raymond A. 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