{"id":70,"date":"2022-01-26T12:07:33","date_gmt":"2022-01-26T11:07:33","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?page_id=70"},"modified":"2026-04-15T17:16:14","modified_gmt":"2026-04-15T15:16:14","slug":"iliad","status":"publish","type":"page","link":"https:\/\/ern-ithaca.eu\/es\/our-research-activities\/iliad\/","title":{"rendered":"Registro ILIAD"},"content":{"rendered":"

ILIAD conecta todas las bases de datos externas de nuestros miembros de pleno derecho, as\u00ed como los biobancos de pacientes con s\u00edndromes dism\u00f3rficos o de MCA y\/o discapacidad intelectual. <\/strong><\/p>\n\n\n\n

\n
Encuentra a tu responsable de protecci\u00f3n de datos<\/a><\/div>\n\n\n\n
Transparencia<\/a><\/div>\n\n\n\n
Proyectos y publicaciones<\/a><\/div>\n<\/div>\n\n\n\n

A trav\u00e9s de la red de expertos y de participaci\u00f3n de pacientes de ERN-ITHACA, ILIAD ofrece una infraestructura para el diagn\u00f3stico, la atenci\u00f3n sanitaria multidisciplinar altamente especializada, el tratamiento basado en la evidencia y la recopilaci\u00f3n segura de datos de los pacientes. <\/p>\n\n\n\n

ILIAD consta de dos componentes: <\/p>\n\n\n\n

    \n
  1. registro centralizado y en l\u00ednea, <\/strong><\/li>\n\n\n\n
  2. una red de registros sat\u00e9lite\/cliente interconectados que conforman la federaci\u00f3n de registros ERN-ITHACA<\/strong>, <\/li>\n<\/ol>\n\n\n\n

    en bases de datos creadas de acuerdo con las normas internacionales de interoperabilidad del JRC y el EJP-RD. <\/p>\n\n\n\n

    Adem\u00e1s del registro principal, ILIAD incluye subregistros tem\u00e1ticos de pacientes<\/strong> con diagn\u00f3sticos monog\u00e9nicos o gen\u00f3micos (cromos\u00f3micos) confirmados, revisados por los equipos de la ERN. <\/p>\n\n\n\n

    Seg\u00fan el software de c\u00f3digo abierto<\/strong> MOLGENIS<\/strong>, ofrece estructuras de datos flexibles y completas, funciones intuitivas de importaci\u00f3n y consulta de datos, y una interfaz FAIR para el intercambio de bases de datos. En cuanto a la interoperabilidad, el registro est\u00e1 conectado a la Infraestructura Europea de Registros de Enfermedades Raras (ERDRI) y utiliza los elementos de datos comunes y las herramientas comunes de seudonimizaci\u00f3n del Centro Com\u00fan de Investigaci\u00f3n (JRC) para vincular cohortes de pacientes con enfermedades raras. <\/p>\n\n\n\n

    ILIAD tiene una pol\u00edtica estricta de acceso a los datos<\/strong> para solicitar el acceso a los datos, la gesti\u00f3n de los registros y el cumplimiento de los requisitos legales y reglamentarios relativos al uso de datos personales. <\/p>\n\n\n\n

    Datos de pacientes del estudio ERN-ITHACA<\/strong> se analizar\u00e1n para obtener conocimientos epidemiol\u00f3gicos de alta calidad y declaraciones de consenso de expertos, que sirvan de base para la toma de decisiones pol\u00edticas que beneficien a los pacientes con ERN-ITHACA y a todos los pacientes con enfermedades raras en general (esta acci\u00f3n est\u00e1 cofinanciada por el III Programa de Salud de la UE: n\u00famero de subvenci\u00f3n 947617).<\/p>","protected":false},"excerpt":{"rendered":"

    Through ERN-ITHACA\u2019s expert and patient participation network, ILIAD provides an infrastructure for diagnosis, highly specialised multidisciplinary healthcare, evidence-based management, and collection of secure patient data.  ILIAD consists of two components: in databases built according to international interoperability standards from JRC and EJP-RD.  In addition to the core registry, ILIAD includes thematic sub-registries of patients with […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":6019,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-70","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"\nILIAD registry - ERN ITHACA<\/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:\/\/ern-ithaca.eu\/es\/our-research-activities\/iliad\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ILIAD registry - 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