{"id":49282,"date":"2025-05-02T09:13:20","date_gmt":"2025-05-02T09:13:20","guid":{"rendered":"https:\/\/www.elza-institute.com\/?p=45760"},"modified":"2025-05-02T09:13:20","modified_gmt":"2025-05-02T09:13:20","slug":"nikki-hafezi-challenging-the-rare-disease-status-of-keratoconus","status":"publish","type":"post","link":"https:\/\/www.elza-institute.com\/pt\/nikki-hafezi-challenging-the-rare-disease-status-of-keratoconus\/","title":{"rendered":"Nikki Hafezi desafia o estatuto de doen\u00e7a rara do ceratocone"},"content":{"rendered":"<div data-elementor-type=\"wp-post\" data-elementor-id=\"49282\" class=\"elementor elementor-49282\" data-elementor-post-type=\"post\">\n\t\t\t\t<div class=\"elementor-element elementor-element-4009c66a e-flex e-con-boxed e-con e-parent\" data-id=\"4009c66a\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-37da00bf elementor-widget elementor-widget-text-editor\" data-id=\"37da00bf\" data-element_type=\"widget\" data-e-type=\"widget\" data-no-translation=\"\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<style>.elementor-element-37da00bf{display:none !important}<\/style>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-33bb266 e-flex e-con-boxed e-con e-parent\" data-id=\"33bb266\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-05ca3d4 elementor-widget elementor-widget-text-editor\" data-id=\"05ca3d4\" data-element_type=\"widget\" data-e-type=\"widget\" data-no-translation=\"\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<style>.elementor-element-05ca3d4{display:none !important}<\/style>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-25dd0fb e-flex e-con-boxed e-con e-parent\" data-id=\"25dd0fb\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-5a81570 elementor-widget elementor-widget-text-editor\" data-id=\"5a81570\" data-element_type=\"widget\" data-e-type=\"widget\" data-no-translation=\"\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Na confer\u00eancia &#8220;Gen\u00e9tica das Doen\u00e7as Oculares 2025&#8221; em S\u00e3o Petersburgo, a CEO do ELZA Institute <a href=\"https:\/\/www.elza-institute.com\/pt\/sobre\/nikki-hafezi\/\">Nikki Hafezi, MAS IP ETHZ<\/a> fez uma apresenta\u00e7\u00e3o provocativa intitulada &#8220;Ceratocone: \u00e9 realmente uma doen\u00e7a rara?&#8221; \u2013 uma pergunta que desafia uma das suposi\u00e7\u00f5es mais antigas da oftalmologia.<\/p><p><span style=\"background-color: initial;\">Hafezi come\u00e7ou abordando a ampla aceita\u00e7\u00e3o de uma estimativa de preval\u00eancia de 1986, que coloca o ceratocone em 1 para cada 2.000 pessoas \u2013 classificando formalmente a doen\u00e7a como rara. No entanto, como destacou, dados epidemiol\u00f3gicos emergentes contam uma hist\u00f3ria muito diferente. Com base nos dados do estudo K-MAP, lan\u00e7ado pela <\/span><a href=\"https:\/\/www.lightforsight.org\">Light for Sight Foundation<\/a><span style=\"background-color: initial;\">, ela apresentou evid\u00eancias convincentes de uma preval\u00eancia significativamente maior, especialmente em popula\u00e7\u00f5es pedi\u00e1tricas e adolescentes.<\/span><\/p>\n<p>O <a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/29298777\/\">estudo piloto K-MAP<\/a> realizado em Riad, Ar\u00e1bia Saudita, liderado por Torres-Netto et al., encontrou ceratocone em 4,79% das crian\u00e7as entre 6 e 21 anos \u2013 quase 100 vezes mais do que a taxa tradicionalmente citada. Nikki Hafezi enfatizou que tais achados n\u00e3o s\u00e3o anomalias, mas refletem a capacidade diagn\u00f3stica moderna, como a tomografia corneana baseada em Scheimpflug e \u00edndices biomec\u00e2nicos avan\u00e7ados, capazes de detectar est\u00e1gios subcl\u00ednicos que m\u00e9todos mais antigos n\u00e3o conseguiam identificar.<\/p>\n<p>Em sua apresenta\u00e7\u00e3o, Hafezi defendeu a reclassifica\u00e7\u00e3o do ceratocone nos marcos regulat\u00f3rios globais de sa\u00fade e pediu programas de triagem em escolas, especialmente em regi\u00f5es com alta preval\u00eancia. Segundo ela, a detec\u00e7\u00e3o precoce permite o crosslinking corneano (CXL) em tempo h\u00e1bil, preservando a vis\u00e3o e evitando a necessidade de transplante de c\u00f3rnea.<\/p>\n<p>Ela tamb\u00e9m destacou a miss\u00e3o translacional do ELZA Institute: desde o estabelecimento da preval\u00eancia por meio do K-MAP at\u00e9 o avan\u00e7o do tratamento com protocolos personalizados de CXL, como o ELZA-PACE, o instituto est\u00e1 estabelecendo novos padr\u00f5es cl\u00ednicos e cient\u00edficos.<\/p>\n<p>Hafezi concluiu com uma mensagem voltada \u00e0 pol\u00edtica de sa\u00fade: se o ceratocone n\u00e3o \u00e9 uma doen\u00e7a rara, nossas estrat\u00e9gias diagn\u00f3sticas e terap\u00eauticas devem ser redimensionadas. &#8220;Ignorar sua verdadeira preval\u00eancia&#8221;, alertou, &#8220;atrasar\u00e1 o tratamento e custar\u00e1 vis\u00e3o.&#8221; Ela tamb\u00e9m agradeceu aos organizadores da confer\u00eancia Gen\u00e9tica das Doen\u00e7as Oculares 2025 \u2013 especialmente \u00e0 equipe do Instituto Vavilov de Gen\u00e9tica Geral da Academia Russa de Ci\u00eancias \u2013 pela oportunidade de contribuir com esse importante di\u00e1logo.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"<p>Hafezi abordou a depend\u00eancia generalizada de uma estimativa de preval\u00eancia de 1986 que coloca o ceratocone em 1 em 2.000 - classificando-o formalmente como raro. No entanto, como ela destacou, os dados epidemiol\u00f3gicos emergentes contam uma hist\u00f3ria totalmente diferente. O ceratocone \u00e9 uma doen\u00e7a \u00f3rf\u00e3, n\u00e3o rara.<\/p>","protected":false},"author":4,"featured_media":49227,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[223,97],"tags":[561,130,100,679,1190,1191,123,1192,711,844,593,1193,1194,1195,953],"class_list":["post-49282","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-nikki-hafezi","category-podium-power","tag-corneal-ectasia","tag-cross-linking","tag-cxl","tag-elza-institute","tag-genetic-eye-diseases","tag-k-map-study","tag-keratoconus","tag-keratoconus-prevalence","tag-keratoconus-screening","tag-light-for-sight-foundation","tag-nikki-hafezi","tag-orphan-disease","tag-pediatric-ophthalmology","tag-riyadh-study","tag-scheimpflug-tomography"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Nikki Hafezi Challenges the Rare Disease Status of Keratoconus - 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