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

ILIAD relie l'ensemble des bases de donn\u00e9es externes de nos membres \u00e0 part enti\u00e8re, ainsi que les biobanques consacr\u00e9es aux patients atteints de syndromes dysmorphiques ou du syndrome de MCA et\/ou d'un handicap intellectuel. <\/strong><\/p>\n\n\n\n

\n
Trouvez votre d\u00e9l\u00e9gu\u00e9 \u00e0 la protection des donn\u00e9es<\/a><\/div>\n\n\n\n
Transparence<\/a><\/div>\n\n\n\n
Projets et publications<\/a><\/div>\n<\/div>\n\n\n\n

Gr\u00e2ce au r\u00e9seau d'experts et de patients de ERN-ITHACA, ILIAD offre une infrastructure permettant le diagnostic, la prise en charge m\u00e9dicale multidisciplinaire hautement sp\u00e9cialis\u00e9e, une gestion fond\u00e9e sur des donn\u00e9es probantes et la collecte s\u00e9curis\u00e9e des donn\u00e9es des patients. <\/p>\n\n\n\n

Le ILIAD se compose de deux \u00e9l\u00e9ments : <\/p>\n\n\n\n

    \n
  1. registre centralis\u00e9, accessible en ligne, <\/strong><\/li>\n\n\n\n
  2. un r\u00e9seau de registres satellites et clients interconnect\u00e9s formant la f\u00e9d\u00e9ration de registres ERN-ITHACA<\/strong>, <\/li>\n<\/ol>\n\n\n\n

    dans des bases de donn\u00e9es con\u00e7ues conform\u00e9ment aux normes internationales d'interop\u00e9rabilit\u00e9 du CCR et de l'EJP-RD. <\/p>\n\n\n\n

    Outre le registre principal, ILIAD comprend sous-registres th\u00e9matiques de patients<\/strong> pour lesquelles un diagnostic monog\u00e9nique ou g\u00e9nomique (chromosomique) a \u00e9t\u00e9 \u00e9tabli, et dont les donn\u00e9es ont \u00e9t\u00e9 valid\u00e9es par les \u00e9quipes de l'ERN. <\/p>\n\n\n\n

    D'apr\u00e8s le logiciels libres<\/strong> MOLGENIS<\/strong>, il offre des structures de donn\u00e9es riches et flexibles, des fonctionnalit\u00e9s conviviales d\u2019importation et d\u2019interrogation des donn\u00e9es, ainsi qu\u2019une interface FAIR pour l\u2019\u00e9change de bases de donn\u00e9es. Afin d\u2019assurer l\u2019interop\u00e9rabilit\u00e9, le registre est reli\u00e9 \u00e0 l\u2019Infrastructure europ\u00e9enne des registres des maladies rares (ERDRI) et utilise les \u00e9l\u00e9ments de donn\u00e9es communs ainsi que les outils communs de pseudonymisation du CCR pour relier les cohortes de patients atteints de maladies rares. <\/p>\n\n\n\n

    ILIAD a une politique stricte d'acc\u00e8s aux donn\u00e9es<\/strong> pour les demandes d'acc\u00e8s aux donn\u00e9es, la gouvernance des registres et le respect des exigences l\u00e9gales et r\u00e9glementaires relatives \u00e0 l'utilisation des donn\u00e9es \u00e0 caract\u00e8re personnel. <\/p>\n\n\n\n

    Donn\u00e9es relatives aux patients ERN-ITHACA<\/strong> seront analys\u00e9es afin de fournir des informations \u00e9pid\u00e9miologiques de grande qualit\u00e9 et des d\u00e9clarations de consensus d'experts, qui serviront de base aux d\u00e9cisions politiques en faveur des patients atteints du syndrome ERN-ITHACA et, plus g\u00e9n\u00e9ralement, de tous les patients atteints de maladies rares (cette action est cofinanc\u00e9e par le 3e programme de sant\u00e9 de l'UE : num\u00e9ro de subvention 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\/fr\/our-research-activities\/iliad\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ILIAD registry - 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