{"id":6053,"date":"2024-10-29T15:50:48","date_gmt":"2024-10-29T14:50:48","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?page_id=6053"},"modified":"2026-05-06T16:22:30","modified_gmt":"2026-05-06T14:22:30","slug":"endorsed-guidelines","status":"publish","type":"page","link":"https:\/\/ern-ithaca.eu\/fr\/guidelines\/endorsed-guidelines\/","title":{"rendered":"Lignes directrices approuv\u00e9es"},"content":{"rendered":"<p class=\"wp-block-paragraph\"><strong>Recommandations de pratique clinique <\/strong>Les \u00ab CPG \u00bb (guides de pratique clinique), ou simplement \u00ab recommandations \u00bb, sont des conseils sur la mani\u00e8re de diagnostiquer et de traiter une affection m\u00e9dicale. Elles sont r\u00e9dig\u00e9es par des experts m\u00e9dicaux avec le concours de repr\u00e9sentants des patients, et s\u2019adressent aux m\u00e9decins, mais aussi aux infirmiers et \u00e0 tout autre professionnel de sant\u00e9. &nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Une recommandation r\u00e9sume les connaissances m\u00e9dicales actuelles sur une maladie donn\u00e9e, \u00e9value les avantages et les inconv\u00e9nients des proc\u00e9dures diagnostiques et des traitements, et formule des recommandations sp\u00e9cifiques sur la base de ces informations.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Les recommandations constituant un outil clinique essentiel, il est primordial qu\u2019elles soient fiables. Le groupe de travail sur les recommandations ERN-ITHACA s\u2019att\u00e8le donc \u00e0 \u00e9valuer la <strong>qualit\u00e9 m\u00e9thodologique des recommandations existantes sur les maladies rares<\/strong>. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Les publications que le groupe de travail juge fiables sur le plan m\u00e9thodologique sont approuv\u00e9es par le ERN-ITHACA et publi\u00e9es sur cette page Web.<\/strong><\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<div class=\"wp-block-ernithaca-block-links wp-block-ernithaca-block-links-wrapper\"><a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/36729052\/\" class=\"wp-block-ernithaca-block-links-content\"><div class=\"wp-block-ernithaca-block-links-infos\"><div class=\"wp-block-ernithaca-block-links-title\"><strong>Prise en charge des adultes atteints du syndrome de d\u00e9l\u00e9tion 22q11.2<\/strong><\/div><div class=\"wp-block-ernithaca-block-links-text text-primary\"><\/div><\/div><span class=\"icon-ernithaca-more\"><\/span><\/a><\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<div class=\"wp-block-ernithaca-block-links wp-block-ernithaca-block-links-wrapper\"><a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/36729053\/\" class=\"wp-block-ernithaca-block-links-content\"><div class=\"wp-block-ernithaca-block-links-infos\"><div class=\"wp-block-ernithaca-block-links-title\"><strong><strong>Prise en charge des enfants atteints du syndrome de d\u00e9l\u00e9tion 22q11.2<\/strong><\/strong><\/div><div class=\"wp-block-ernithaca-block-links-text text-primary\"><\/div><\/div><span class=\"icon-ernithaca-more\"><\/span><\/a><\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<div class=\"wp-block-ernithaca-block-links wp-block-ernithaca-block-links-wrapper\"><a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/37710171\/\" class=\"wp-block-ernithaca-block-links-content\"><div class=\"wp-block-ernithaca-block-links-infos\"><div class=\"wp-block-ernithaca-block-links-title\"><strong>Identification et prise en charge des troubles neuropsychiatriques associ\u00e9s au complexe de la scl\u00e9rose tub\u00e9reuse<\/strong><\/div><div class=\"wp-block-ernithaca-block-links-text text-primary\"><\/div><\/div><span class=\"icon-ernithaca-more\"><\/span><\/a><\/div>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<div class=\"wp-block-ernithaca-block-links wp-block-ernithaca-block-links-wrapper\"><a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/38748847\/\" class=\"wp-block-ernithaca-block-links-content\"><div class=\"wp-block-ernithaca-block-links-infos\"><div class=\"wp-block-ernithaca-block-links-title\"><strong>Prise en charge des filles et des femmes atteintes du syndrome de Turner<\/strong><\/div><div class=\"wp-block-ernithaca-block-links-text text-primary\"><\/div><\/div><span class=\"icon-ernithaca-more\"><\/span><\/a><\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<div class=\"wp-block-ernithaca-block-links wp-block-ernithaca-block-links-wrapper\"><a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/32720526\/\" class=\"wp-block-ernithaca-block-links-content\"><div class=\"wp-block-ernithaca-block-links-infos\"><div class=\"wp-block-ernithaca-block-links-title\"><strong>G\u00e9rer la communication des personnes atteintes du syndrome de Rett<\/strong><\/div><div class=\"wp-block-ernithaca-block-links-text text-primary\"><\/div><\/div><span class=\"icon-ernithaca-more\"><\/span><\/a><\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<div class=\"wp-block-ernithaca-block-links wp-block-ernithaca-block-links-wrapper\"><a href=\"https:\/\/www.nature.com\/articles\/s41431-024-01634-7\" class=\"wp-block-ernithaca-block-links-content\"><div class=\"wp-block-ernithaca-block-links-infos\"><div class=\"wp-block-ernithaca-block-links-title\"><strong>Syndrome de Bardet-Biedl : am\u00e9lioration des crit\u00e8res de diagnostic et de la prise en charge<\/strong><\/div><div class=\"wp-block-ernithaca-block-links-text text-primary\"><\/div><\/div><span class=\"icon-ernithaca-more\"><\/span><\/a><\/div>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<div class=\"wp-block-ernithaca-block-links wp-block-ernithaca-block-links-wrapper\"><a href=\"https:\/\/www.nature.com\/articles\/s41581-024-00818-0\" class=\"wp-block-ernithaca-block-links-content\"><div class=\"wp-block-ernithaca-block-links-infos\"><div class=\"wp-block-ernithaca-block-links-title\"><strong><strong>Atteinte r\u00e9nale dans le syndrome de scl\u00e9rose tub\u00e9reuse<\/strong><\/strong><\/div><div class=\"wp-block-ernithaca-block-links-text text-primary\"><\/div><\/div><span class=\"icon-ernithaca-more\"><\/span><\/a><\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\"><\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\"><\/div>\n<\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>","protected":false},"excerpt":{"rendered":"<p>Clinical practice guidelines (CPGs), or simply guidelines, are recommendations on how to diagnose and treat a medical condition. They are written by medical experts with the support of patient\u2019s representatives, and are directed to doctors, but also&nbsp;nurses or any other health care professionals. &nbsp; A guideline summarizes the current medical knowledge on a given disease, [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":3042,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-6053","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>Endorsed guidelines - 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\/guidelines\/endorsed-guidelines\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Endorsed guidelines - ERN ITHACA\" \/>\n<meta property=\"og:description\" content=\"Clinical practice guidelines (CPGs), or simply guidelines, are recommendations on how to diagnose and treat a medical condition. They are written by medical experts with the support of patient\u2019s representatives, and are directed to doctors, but also&nbsp;nurses or any other health care professionals. &nbsp; A guideline summarizes the current medical knowledge on a given disease, [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/ern-ithaca.eu\/fr\/guidelines\/endorsed-guidelines\/\" \/>\n<meta property=\"og:site_name\" content=\"ERN ITHACA\" \/>\n<meta property=\"article:modified_time\" content=\"2026-05-06T14:22:30+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:site\" content=\"@ERNIthaca\" \/>\n<meta name=\"twitter:label1\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data1\" content=\"1 minute\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/guidelines\\\/endorsed-guidelines\\\/\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/guidelines\\\/endorsed-guidelines\\\/\",\"name\":\"Endorsed guidelines - ERN ITHACA\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#website\"},\"datePublished\":\"2024-10-29T14:50:48+00:00\",\"dateModified\":\"2026-05-06T14:22:30+00:00\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/guidelines\\\/endorsed-guidelines\\\/#breadcrumb\"},\"inLanguage\":\"fr-FR\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/ern-ithaca.eu\\\/guidelines\\\/endorsed-guidelines\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/guidelines\\\/endorsed-guidelines\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\\\/\\\/ern-ithaca.eu\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Guidelines\",\"item\":\"https:\\\/\\\/ern-ithaca.eu\\\/guidelines\\\/\"},{\"@type\":\"ListItem\",\"position\":3,\"name\":\"Endorsed guidelines\"}]},{\"@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\":\"fr-FR\"},{\"@type\":\"Organization\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#organization\",\"name\":\"ERN-ITHACA\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@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":"Endorsed guidelines - 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\/fr\/guidelines\/endorsed-guidelines\/","og_locale":"fr_FR","og_type":"article","og_title":"Endorsed guidelines - ERN ITHACA","og_description":"Clinical practice guidelines (CPGs), or simply guidelines, are recommendations on how to diagnose and treat a medical condition. They are written by medical experts with the support of patient\u2019s representatives, and are directed to doctors, but also&nbsp;nurses or any other health care professionals. &nbsp; A guideline summarizes the current medical knowledge on a given disease, [&hellip;]","og_url":"https:\/\/ern-ithaca.eu\/fr\/guidelines\/endorsed-guidelines\/","og_site_name":"ERN ITHACA","article_modified_time":"2026-05-06T14:22:30+00:00","twitter_card":"summary_large_image","twitter_site":"@ERNIthaca","twitter_misc":{"Dur\u00e9e de lecture estim\u00e9e":"1 minute"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/ern-ithaca.eu\/guidelines\/endorsed-guidelines\/","url":"https:\/\/ern-ithaca.eu\/guidelines\/endorsed-guidelines\/","name":"Endorsed guidelines - ERN ITHACA","isPartOf":{"@id":"https:\/\/ern-ithaca.eu\/#website"},"datePublished":"2024-10-29T14:50:48+00:00","dateModified":"2026-05-06T14:22:30+00:00","breadcrumb":{"@id":"https:\/\/ern-ithaca.eu\/guidelines\/endorsed-guidelines\/#breadcrumb"},"inLanguage":"fr-FR","potentialAction":[{"@type":"ReadAction","target":["https:\/\/ern-ithaca.eu\/guidelines\/endorsed-guidelines\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/ern-ithaca.eu\/guidelines\/endorsed-guidelines\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/ern-ithaca.eu\/"},{"@type":"ListItem","position":2,"name":"Guidelines","item":"https:\/\/ern-ithaca.eu\/guidelines\/"},{"@type":"ListItem","position":3,"name":"Endorsed guidelines"}]},{"@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":"fr-FR"},{"@type":"Organization","@id":"https:\/\/ern-ithaca.eu\/#organization","name":"ERN-ITHACA","url":"https:\/\/ern-ithaca.eu\/","logo":{"@type":"ImageObject","inLanguage":"fr-FR","@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\/fr\/wp-json\/wp\/v2\/pages\/6053","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/comments?post=6053"}],"version-history":[{"count":6,"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/pages\/6053\/revisions"}],"predecessor-version":[{"id":9729,"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/pages\/6053\/revisions\/9729"}],"up":[{"embeddable":true,"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/pages\/3042"}],"wp:attachment":[{"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/media?parent=6053"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}