{"id":10696,"date":"2026-10-13T10:35:12","date_gmt":"2026-10-13T08:35:12","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?post_type=publications&p=10696"},"modified":"2026-10-13T10:35:14","modified_gmt":"2026-10-13T08:35:14","slug":"this-study-aims-to-evaluate-methodological-rigor-of-clinical-practice-guidelines-developed-endorsed-or-displayed-by-the-european-reference-networks-erns-across-a-broad-spectrum-of-rare-diseases","status":"publish","type":"publications","link":"https:\/\/ern-ithaca.eu\/it\/our-research-activities\/publications\/this-study-aims-to-evaluate-methodological-rigor-of-clinical-practice-guidelines-developed-endorsed-or-displayed-by-the-european-reference-networks-erns-across-a-broad-spectrum-of-rare-diseases\/","title":{"rendered":"Methodological rigor of rare disease guidelines in Europe: a scoping review and critical appraisal"},"content":{"rendered":"","protected":false},"template":"","tags":[],"class_list":["post-10696","publications","type-publications","status-publish","hentry"],"acf":[],"yoast_head":"\nMethodological rigor of rare disease guidelines in Europe: a scoping review and critical appraisal - ERN ITHACA<\/title>\n<meta name=\"description\" content=\"This study aims to evaluate methodological rigor of clinical practice guidelines developed, endorsed or displayed by the European Reference Networks (ERNs) across a broad spectrum of rare diseases. Given the well-recognized challenges of guideline development in rare conditions\u2014including limited high-quality evidence, difficulties in formulating clinical questions, and barriers to meaningful patient involvement\u2014we assess how these issues manifest in ERN guidelines to identify best practices. Specifically, the study seeks to generate insight into methodological approaches related to framing clinical questions, managing evidence scarcity, evaluating the strengths and limitations of available evidence, and incorporating patient perspectives, while highlighting shared methodological challenges across diverse clinical domains.\" \/>\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\/publications\/this-study-aims-to-evaluate-methodological-rigor-of-clinical-practice-guidelines-developed-endorsed-or-displayed-by-the-european-reference-networks-erns-across-a-broad-spectrum-of-rare-diseases\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Methodological rigor of rare disease guidelines in Europe: a scoping review and critical appraisal - ERN ITHACA\" \/>\n<meta property=\"og:description\" content=\"This study aims to evaluate methodological rigor of clinical practice guidelines developed, endorsed or displayed by the European Reference Networks (ERNs) across a broad spectrum of rare diseases. Given the well-recognized challenges of guideline development in rare conditions\u2014including limited high-quality evidence, difficulties in formulating clinical questions, and barriers to meaningful patient involvement\u2014we assess how these issues manifest in ERN guidelines to identify best practices. Specifically, the study seeks to generate insight into methodological approaches related to framing clinical questions, managing evidence scarcity, evaluating the strengths and limitations of available evidence, and incorporating patient perspectives, while highlighting shared methodological challenges across diverse clinical domains.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/ern-ithaca.eu\/it\/our-research-activities\/publications\/this-study-aims-to-evaluate-methodological-rigor-of-clinical-practice-guidelines-developed-endorsed-or-displayed-by-the-european-reference-networks-erns-across-a-broad-spectrum-of-rare-diseases\/\" \/>\n<meta property=\"og:site_name\" content=\"ERN ITHACA\" \/>\n<meta property=\"article:modified_time\" content=\"2026-10-13T08:35:14+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:site\" content=\"@ERNIthaca\" \/>\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\\\/publications\\\/this-study-aims-to-evaluate-methodological-rigor-of-clinical-practice-guidelines-developed-endorsed-or-displayed-by-the-european-reference-networks-erns-across-a-broad-spectrum-of-rare-diseases\\\/\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/our-research-activities\\\/publications\\\/this-study-aims-to-evaluate-methodological-rigor-of-clinical-practice-guidelines-developed-endorsed-or-displayed-by-the-european-reference-networks-erns-across-a-broad-spectrum-of-rare-diseases\\\/\",\"name\":\"Methodological rigor of rare disease guidelines in Europe: a scoping review and critical appraisal - ERN ITHACA\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#website\"},\"datePublished\":\"2026-10-13T08:35:12+00:00\",\"dateModified\":\"2026-10-13T08:35:14+00:00\",\"description\":\"This study aims to evaluate methodological rigor of clinical practice guidelines developed, endorsed or displayed by the European Reference Networks (ERNs) across a broad spectrum of rare diseases. 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