{"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\/de\/our-research-activities\/iliad\/","title":{"rendered":"ILIAD-Register"},"content":{"rendered":"

ILIAD vernetzt alle externen Datenbanken unserer Vollmitglieder sowie Biobanken f\u00fcr Patienten mit dysmorphen Syndromen, MCA-Syndromen und\/oder geistiger Behinderung. <\/strong><\/p>\n\n\n\n

\n
Finden Sie Ihren Datenschutzbeauftragten<\/a><\/div>\n\n\n\n
Transparenz<\/a><\/div>\n\n\n\n
Projekte & Ver\u00f6ffentlichungen<\/a><\/div>\n<\/div>\n\n\n\n

\u00dcber das Netzwerk von Fachleuten und Patienten von ERN-ITHACA bietet ILIAD eine Infrastruktur f\u00fcr die Diagnose, hochspezialisierte multidisziplin\u00e4re Gesundheitsversorgung, evidenzbasiertes Management und die Erfassung sicherer Patientendaten. <\/p>\n\n\n\n

ILIAD besteht aus zwei Komponenten: <\/p>\n\n\n\n

    \n
  1. zentrales, webbasiertes Register, <\/strong><\/li>\n\n\n\n
  2. ein Netzwerk aus miteinander verbundenen Satelliten-\/Client-Registern, das den ERN-ITHACA-Registerverbund bildet<\/strong>, <\/li>\n<\/ol>\n\n\n\n

    in Datenbanken, die gem\u00e4\u00df den internationalen Interoperabilit\u00e4tsstandards von JRC und EJP-RD aufgebaut sind. <\/p>\n\n\n\n

    Neben dem Kernregister umfasst ILIAD au\u00dferdem thematische Teilregister von Patienten<\/strong> mit nachgewiesenen monogenen oder genomischen (chromosomalen) Diagnosen, die von ERN-Teams zusammengestellt wurden. <\/p>\n\n\n\n

    Auf der Grundlage der Open-Source-Software<\/strong> MOLGENIS<\/strong>, bietet es flexible, umfangreiche Datenstrukturen, eine benutzerfreundliche Datenimport- und Abfragefunktion sowie eine FAIR-konforme Schnittstelle f\u00fcr den Datenaustausch. Im Hinblick auf die Interoperabilit\u00e4t ist das Register an die Europ\u00e4ische Infrastruktur f\u00fcr Register seltener Krankheiten (ERDRI) angebunden und nutzt die gemeinsamen Datenelemente sowie die gemeinsamen Pseudonymisierungswerkzeuge des JRC, um Patientenkohorten mit seltenen Krankheiten miteinander zu verkn\u00fcpfen. <\/p>\n\n\n\n

    ILIAD hat eine strenge Richtlinie f\u00fcr den Datenzugriff<\/strong> f\u00fcr die Beantragung des Zugriffs auf die Daten, die Verwaltung der Register sowie die Einhaltung der gesetzlichen und beh\u00f6rdlichen Vorschriften zur Verwendung personenbezogener Daten. <\/p>\n\n\n\n

    ERN-ITHACA-Patientendaten<\/strong> werden analysiert, um hochwertige epidemiologische Erkenntnisse und Konsensaussagen von Experten zu gewinnen, die als Grundlage f\u00fcr politische Entscheidungen dienen, die ERN-ITHACA-Patienten und allen Patienten mit seltenen Erkrankungen im Allgemeinen zugutekommen (diese Ma\u00dfnahme wird im Rahmen des 3. Gesundheitsprogramms der EU kofinanziert: F\u00f6rdernummer 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\/de\/our-research-activities\/iliad\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\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.  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 […]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/ern-ithaca.eu\/de\/our-research-activities\/iliad\/\" \/>\n<meta property=\"og:site_name\" content=\"ERN ITHACA\" \/>\n<meta property=\"article:modified_time\" content=\"2026-04-15T15:16:14+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:site\" content=\"@ERNIthaca\" \/>\n<meta name=\"twitter:label1\" content=\"Gesch\u00e4tzte Lesezeit\" \/>\n\t<meta name=\"twitter:data1\" content=\"2\u00a0Minuten\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/our-research-activities\\\/iliad\\\/\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/our-research-activities\\\/iliad\\\/\",\"name\":\"ILIAD registry - ERN ITHACA\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#website\"},\"datePublished\":\"2022-01-26T11:07:33+00:00\",\"dateModified\":\"2026-04-15T15:16:14+00:00\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/our-research-activities\\\/iliad\\\/#breadcrumb\"},\"inLanguage\":\"de\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/ern-ithaca.eu\\\/our-research-activities\\\/iliad\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/our-research-activities\\\/iliad\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\\\/\\\/ern-ithaca.eu\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Our Research Activities\",\"item\":\"https:\\\/\\\/ern-ithaca.eu\\\/our-research-activities\\\/\"},{\"@type\":\"ListItem\",\"position\":3,\"name\":\"ILIAD registry\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#website\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/\",\"name\":\"ERN ITHACA\",\"description\":\"WELCOME TO ERN-ITHACA WEBSITE!\",\"publisher\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/ern-ithaca.eu\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"de\"},{\"@type\":\"Organization\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#organization\",\"name\":\"ERN-ITHACA\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"de\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#\\\/schema\\\/logo\\\/image\\\/\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2022\\\/02\\\/Logo-ERN-ITHACA.jpg\",\"contentUrl\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2022\\\/02\\\/Logo-ERN-ITHACA.jpg\",\"width\":454,\"height\":172,\"caption\":\"ERN-ITHACA\"},\"image\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#\\\/schema\\\/logo\\\/image\\\/\"},\"sameAs\":[\"https:\\\/\\\/x.com\\\/ERNIthaca\",\"https:\\\/\\\/www.linkedin.com\\\/company\\\/ithaca-european-reference-network-on-congenital-malformations-ans-rare-intellectual-disability\\\/?viewAsMember=true\"]}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"ILIAD registry - ERN ITHACA","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/ern-ithaca.eu\/de\/our-research-activities\/iliad\/","og_locale":"de_DE","og_type":"article","og_title":"ILIAD registry - ERN ITHACA","og_description":"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 […]","og_url":"https:\/\/ern-ithaca.eu\/de\/our-research-activities\/iliad\/","og_site_name":"ERN ITHACA","article_modified_time":"2026-04-15T15:16:14+00:00","twitter_card":"summary_large_image","twitter_site":"@ERNIthaca","twitter_misc":{"Gesch\u00e4tzte Lesezeit":"2\u00a0Minuten"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/ern-ithaca.eu\/our-research-activities\/iliad\/","url":"https:\/\/ern-ithaca.eu\/our-research-activities\/iliad\/","name":"ILIAD registry - ERN ITHACA","isPartOf":{"@id":"https:\/\/ern-ithaca.eu\/#website"},"datePublished":"2022-01-26T11:07:33+00:00","dateModified":"2026-04-15T15:16:14+00:00","breadcrumb":{"@id":"https:\/\/ern-ithaca.eu\/our-research-activities\/iliad\/#breadcrumb"},"inLanguage":"de","potentialAction":[{"@type":"ReadAction","target":["https:\/\/ern-ithaca.eu\/our-research-activities\/iliad\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/ern-ithaca.eu\/our-research-activities\/iliad\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/ern-ithaca.eu\/"},{"@type":"ListItem","position":2,"name":"Our Research Activities","item":"https:\/\/ern-ithaca.eu\/our-research-activities\/"},{"@type":"ListItem","position":3,"name":"ILIAD registry"}]},{"@type":"WebSite","@id":"https:\/\/ern-ithaca.eu\/#website","url":"https:\/\/ern-ithaca.eu\/","name":"ERN ITHACA","description":"WELCOME TO ERN-ITHACA WEBSITE!","publisher":{"@id":"https:\/\/ern-ithaca.eu\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/ern-ithaca.eu\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"de"},{"@type":"Organization","@id":"https:\/\/ern-ithaca.eu\/#organization","name":"ERN-ITHACA","url":"https:\/\/ern-ithaca.eu\/","logo":{"@type":"ImageObject","inLanguage":"de","@id":"https:\/\/ern-ithaca.eu\/#\/schema\/logo\/image\/","url":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Logo-ERN-ITHACA.jpg","contentUrl":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Logo-ERN-ITHACA.jpg","width":454,"height":172,"caption":"ERN-ITHACA"},"image":{"@id":"https:\/\/ern-ithaca.eu\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/x.com\/ERNIthaca","https:\/\/www.linkedin.com\/company\/ithaca-european-reference-network-on-congenital-malformations-ans-rare-intellectual-disability\/?viewAsMember=true"]}]}},"_links":{"self":[{"href":"https:\/\/ern-ithaca.eu\/de\/wp-json\/wp\/v2\/pages\/70","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ern-ithaca.eu\/de\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/ern-ithaca.eu\/de\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/ern-ithaca.eu\/de\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/ern-ithaca.eu\/de\/wp-json\/wp\/v2\/comments?post=70"}],"version-history":[{"count":13,"href":"https:\/\/ern-ithaca.eu\/de\/wp-json\/wp\/v2\/pages\/70\/revisions"}],"predecessor-version":[{"id":9628,"href":"https:\/\/ern-ithaca.eu\/de\/wp-json\/wp\/v2\/pages\/70\/revisions\/9628"}],"up":[{"embeddable":true,"href":"https:\/\/ern-ithaca.eu\/de\/wp-json\/wp\/v2\/pages\/6019"}],"wp:attachment":[{"href":"https:\/\/ern-ithaca.eu\/de\/wp-json\/wp\/v2\/media?parent=70"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}