{"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\/es\/guidelines\/endorsed-guidelines\/","title":{"rendered":"Directrices aprobadas"},"content":{"rendered":"<p class=\"wp-block-paragraph\"><strong>Gu\u00edas de pr\u00e1ctica cl\u00ednica <\/strong>Las \u00abgu\u00edas de pr\u00e1ctica cl\u00ednica\u00bb (CPG), o simplemente \u00abgu\u00edas\u00bb, son recomendaciones sobre c\u00f3mo diagnosticar y tratar una afecci\u00f3n m\u00e9dica. Las redactan expertos m\u00e9dicos con el apoyo de representantes de los pacientes, y est\u00e1n dirigidas a los m\u00e9dicos, pero tambi\u00e9n a las enfermeras y a cualquier otro profesional sanitario. &nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Una gu\u00eda resume los conocimientos m\u00e9dicos actuales sobre una enfermedad determinada, eval\u00faa los beneficios y los riesgos de los procedimientos diagn\u00f3sticos y los tratamientos, y ofrece recomendaciones espec\u00edficas basadas en esta informaci\u00f3n.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Guidelines being a major clinical tool, it is crucial that they are trustworthy. The ERN-ITHACA Guidelines wokgroup is thus working on assessing the <strong>methodological quality of existing guidelines on rare diseases<\/strong>. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Publications that the workgroup evaluates as methodologically reliable&nbsp;are endorsed by the ERN-ITHACA and published on this webpage.<\/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>Managing adults with 22q11.2 deletion syndrome<\/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>Managing children with 22q11.2 deletion syndrome<\/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 and treatment of Tuberous sclerosis complex-associated neuropsychiatric disorders<\/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>Care of girls and women with Turner syndrome<\/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>Managing communication of individuals with Rett syndrome<\/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>Bardet-Biedl syndrome improved diagnosis criteria and management<\/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>Kidney involvement in tuberous sclerosis complex<\/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 v28.7 - 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\/es\/guidelines\/endorsed-guidelines\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\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. 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