{"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\/it\/our-research-activities\/iliad\/","title":{"rendered":"Registro ILIAD"},"content":{"rendered":"<p class=\"wp-block-ernithaca-chapo\"><strong>ILIAD collega tutte le banche dati esterne dei nostri membri a pieno titolo e le biobanche relative a pazienti affetti da sindromi dismorfiche\/MCA e\/o da disabilit\u00e0 intellettiva.&nbsp;<\/strong><\/p>\n\n\n\n<div class=\"wp-block-buttons is-content-justification-center is-layout-flex wp-container-core-buttons-is-layout-fe48e5de wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link wp-element-button\" href=\"https:\/\/ern-ithaca.eu\/it\/our-research-activities\/iliad\/iliad-data-protection-officers\/\">Trova il tuo responsabile della protezione dei dati<\/a><\/div>\n\n\n\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link wp-element-button\" href=\"https:\/\/ern-ithaca.eu\/our-research-activities\/iliad\/iliad-transparency\/\">Trasparenza<\/a><\/div>\n\n\n\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link wp-element-button\" href=\"https:\/\/ern-ithaca.eu\/it\/our-research-activities\/iliad\/iliad-projects-publications\/\">Progetti e pubblicazioni<\/a><\/div>\n<\/div>\n\n\n\n<p class=\"wp-block-paragraph\">Attraverso la rete di esperti e pazienti di ERN-ITHACA, ILIAD fornisce un\u2019infrastruttura per la diagnosi, l\u2019assistenza sanitaria multidisciplinare altamente specializzata, la gestione basata sull\u2019evidenza e la raccolta di dati sicuri sui pazienti.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">ILIAD \u00e8 composto da due elementi: <\/p>\n\n\n\n<ol class=\"wp-block-list\">\n<li><strong>registro centrale basato sul web, <\/strong><\/li>\n\n\n\n<li><strong>una rete di registri satellite\/client collegati tra loro che costituiscono la federazione di registri ERN-ITHACA<\/strong>, <\/li>\n<\/ol>\n\n\n\n<p class=\"wp-block-paragraph\">in banche dati realizzate secondo gli standard internazionali di interoperabilit\u00e0 definiti dal JRC e dall\u2019EJP-RD.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Oltre al registro principale, ILIAD include <strong>sottoregistri tematici dei pazienti<\/strong> con diagnosi monogeniche o genomiche (cromosomiche) accertate, selezionate dai team dell\u2019ERN.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Sulla base del <strong>software open source<\/strong> MOLGENIS<\/strong>, offre strutture di dati flessibili e articolate, funzionalit\u00e0 intuitive per l\u2019importazione e l\u2019interrogazione dei dati, nonch\u00e9 un\u2019interfaccia FAIR per lo scambio di dati tra banche dati. Ai fini dell\u2019interoperabilit\u00e0, il registro \u00e8 collegato all\u2019Infrastruttura europea dei registri delle malattie rare (ERDRI) e utilizza gli elementi di dati comuni e gli strumenti comuni di pseudonimizzazione del JRC per collegare le coorti di pazienti affetti da malattie rare.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">ILIAD ha <strong>una politica rigorosa in materia di accesso ai dati<\/strong> per la richiesta di accesso ai dati, la gestione dei registri e il rispetto dei requisiti legali e normativi in materia di trattamento dei dati personali.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Dati relativi ai pazienti ERN-ITHACA<\/strong> saranno analizzati per fornire approfondimenti epidemiologici di alta qualit\u00e0 e dichiarazioni di consenso degli esperti, al fine di orientare le decisioni politiche a beneficio dei pazienti affetti da ERN-ITHACA e, pi\u00f9 in generale, di tutti i pazienti affetti da malattie rare (questa azione \u00e8 cofinanziata dal 3\u00b0 Programma per la Salute dell\u2019UE: numero di sovvenzione 947617).<\/p>","protected":false},"excerpt":{"rendered":"<p>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.&nbsp; ILIAD consists of two components: in databases built according to international interoperability standards from JRC and EJP-RD.&nbsp; In addition to the core registry, ILIAD includes thematic sub-registries of patients with [&hellip;]<\/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":"<!-- This site is optimized with the Yoast SEO plugin v28.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>ILIAD 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\/it\/our-research-activities\/iliad\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ILIAD registry - ERN ITHACA\" \/>\n<meta property=\"og:description\" content=\"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.&nbsp; 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