{"id":1597,"date":"2022-03-11T15:20:07","date_gmt":"2022-03-11T14:20:07","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?page_id=1597"},"modified":"2024-10-28T15:22:08","modified_gmt":"2024-10-28T14:22:08","slug":"spina-bifida-other-dysraphisms","status":"publish","type":"page","link":"https:\/\/ern-ithaca.eu\/it\/our-workgroups\/spina-bifida-other-dysraphisms\/","title":{"rendered":"Spina bifida e altri disrafismi (WG13)"},"content":{"rendered":"

Presidente e copresidente del gruppo di lavoro <\/h2>\n\n\n\n
\n
\n
\"\"<\/figure>\n<\/div>\n\n\n\n
\n

Presidente: Prof. Giovanni Mosiello
<\/strong>(Roma)<\/p>\n<\/div>\n\n\n\n

\n
\"\"<\/figure>\n<\/div>\n\n\n\n
\n

Copresidente: Jean-Marie Jouannic
<\/strong><\/strong>(Parigi)<\/p>\n<\/div>\n<\/div>\n\n\n\n

<\/div>\n\n\n\n

Disrafismi spinali<\/strong> sono un gruppo di rare sindromi da malformazione congenita che colpiscono la colonna vertebrale del neonato. Sindrome della spina bifida<\/strong> Una particolare patologia rientra in questo gruppo pi\u00f9 ampio. Questo gruppo di lavoro si concentra sul miglioramento dell'assistenza sia per la sindrome della spina bifida che per altri tipi di disrafismi spinali.  <\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n

Tali disturbi richiedono competenze multidisciplinari, che rientrano principalmente nell\u2019ambito di competenza di due ERN: ERN-ITHACA (sindromi malformative) ed eUROGEN (malattie urogenitali). Il gruppo di lavoro sulla spina bifida e altri disrafismi (SBoD) ha quindi la particolarit\u00e0 di essere un gruppo di lavoro inter-ERN<\/strong>. Il suo obiettivo principale \u00e8 la produzione di documenti assistenziali per entrambe le reti ERN. <\/p>\n\n\n\n

<\/div>\n\n\n\n

Elaborazione di una dichiarazione di consenso degli esperti sull\u2019SBoD<\/h2>\n\n\n\n

Questa task force ha riunito un gruppo di esperti multidisciplinari provenienti dalle due reti europee di riferimento (ERN) per esaminare le raccomandazioni nazionali esistenti in materia di disrafismi spinali e per emanare una nuova linea guida europea dichiarazione di consenso degli esperti<\/strong>. <\/p>\n\n\n\n

Si cercher\u00e0 inoltre di elaborare, sulla base di questa perizia, un versione in inglese di facile comprensione per i pazienti<\/strong>, e di fornire traduzioni del presente documento in altre lingue europee, al fine di rendere le informazioni il pi\u00f9 accessibili possibile. <\/p>\n\n\n\n

Per saperne di pi\u00f9 sulle dichiarazioni di consenso degli esperti e sulle linee guida, potete visitare la nostra pagina web dedicata al Gruppo di lavoro sulle linee guida ERN-ITHACA<\/a>. <\/p>\n\n\n\n

<\/div>\n\n\n\n

Produzione di altri documenti relativi all\u2019assistenza per SBoD<\/h2>\n\n\n\n

Questa task force si impegna a diffondere le conoscenze mediche sulla spina bifida e sulle patologie correlate, fornendo nuove Orphacodes<\/strong> per i disrafismi spinali (vedi la nostra pagina su Orphanet<\/a>), e ampliando il Ontologia del fenotipo umano<\/strong> database con nuove descrizioni dei fenotipi fetali (vedi cos\u2019\u00e8 il Progetto \"Ontologia del fenotipo umano\"<\/a>).<\/p>\n\n\n\n

<\/div>\n\n\n\n

Chirurgia fetale <\/h2>\n\n\n\n

Poich\u00e9 i difetti della colonna vertebrale sono individuabili e talvolta curabili prima della nascita, questo gruppo di lavoro comprende una task force impegnata a facilitare l'accesso alla chirurgia fetale.<\/p>\n\n\n\n

Questa task force sta lavorando per individuare e individuare quali centri della rete ITHACA dispongono di competenze nel campo della chirurgia fetale<\/strong>. Questo elenco sar\u00e0 di aiuto sia per gli operatori sanitari che per i pazienti e le loro famiglie.<\/p>\n\n\n\n

Sta inoltre valutando l'adozione di un set di dati specifico per<\/strong> descrizioni prenatali e postnatali delle disrafie spinali, compreso un set di dati relativo alla chirurgia fetale, e sul follow-up dei pazienti affetti da SBoD presenti nel database. Questo progetto fa parte del meta-registro ILIAD, che potete consultare qui:<\/p>\n\n\n\n

Organizzeremo inoltre un nuovo seminario rivolto ai professionisti che operano nel campo della chirurgia fetale<\/strong> per incontrarsi, discutere e scambiarsi conoscenze.<\/p>","protected":false},"excerpt":{"rendered":"

Workgroup Chair and co-Chair Chair: Pr Giovanni Mosiello(Rome) Co-chair: Jean-Marie Jouannic(Paris) Spinal dysraphisms are a group of rare congenital malformation syndromes that affect the baby\u2019s spine. Spina Bifida syndrome is a particular condition part of this broader cluster. This Workgroup focuses on improving care for both Spina Bifida syndrome and other kinds of spinal dysraphisms. […]<\/p>\n","protected":false},"author":253,"featured_media":0,"parent":6017,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-1597","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"\nSpina Bifida & other Dysraphisms (WG13) - 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\/it\/our-workgroups\/spina-bifida-other-dysraphisms\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Spina Bifida & other Dysraphisms (WG13) - ERN ITHACA\" \/>\n<meta property=\"og:description\" content=\"Workgroup Chair and co-Chair Chair: Pr Giovanni Mosiello(Rome) Co-chair: Jean-Marie Jouannic(Paris) Spinal dysraphisms are a group of rare congenital malformation syndromes that affect the baby\u2019s spine. Spina Bifida syndrome is a particular condition part of this broader cluster. This Workgroup focuses on improving care for both Spina Bifida syndrome and other kinds of spinal dysraphisms. […]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/ern-ithaca.eu\/it\/our-workgroups\/spina-bifida-other-dysraphisms\/\" \/>\n<meta property=\"og:site_name\" content=\"ERN ITHACA\" \/>\n<meta property=\"article:modified_time\" content=\"2024-10-28T14:22:08+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Pr-Giovanni-Mosiello.jpeg\" \/>\n\t<meta property=\"og:image:width\" content=\"198\" \/>\n\t<meta property=\"og:image:height\" content=\"255\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:site\" content=\"@ERNIthaca\" \/>\n<meta name=\"twitter:label1\" content=\"Tempo di lettura stimato\" \/>\n\t<meta name=\"twitter:data1\" content=\"1 minuto\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/our-workgroups\\\/spina-bifida-other-dysraphisms\\\/\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/our-workgroups\\\/spina-bifida-other-dysraphisms\\\/\",\"name\":\"Spina Bifida & other Dysraphisms (WG13) - ERN ITHACA\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/our-workgroups\\\/spina-bifida-other-dysraphisms\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/our-workgroups\\\/spina-bifida-other-dysraphisms\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2022\\\/02\\\/Pr-Giovanni-Mosiello.jpeg\",\"datePublished\":\"2022-03-11T14:20:07+00:00\",\"dateModified\":\"2024-10-28T14:22:08+00:00\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/our-workgroups\\\/spina-bifida-other-dysraphisms\\\/#breadcrumb\"},\"inLanguage\":\"it-IT\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/ern-ithaca.eu\\\/our-workgroups\\\/spina-bifida-other-dysraphisms\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"it-IT\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/our-workgroups\\\/spina-bifida-other-dysraphisms\\\/#primaryimage\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2022\\\/02\\\/Pr-Giovanni-Mosiello.jpeg\",\"contentUrl\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2022\\\/02\\\/Pr-Giovanni-Mosiello.jpeg\"},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/our-workgroups\\\/spina-bifida-other-dysraphisms\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\\\/\\\/ern-ithaca.eu\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Our Workgroups\",\"item\":\"https:\\\/\\\/ern-ithaca.eu\\\/our-workgroups\\\/\"},{\"@type\":\"ListItem\",\"position\":3,\"name\":\"Spina Bifida & other Dysraphisms (WG13)\"}]},{\"@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\":\"it-IT\"},{\"@type\":\"Organization\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#organization\",\"name\":\"ERN-ITHACA\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"it-IT\",\"@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":"Spina Bifida & other Dysraphisms (WG13) - 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\/it\/our-workgroups\/spina-bifida-other-dysraphisms\/","og_locale":"it_IT","og_type":"article","og_title":"Spina Bifida & other Dysraphisms (WG13) - ERN ITHACA","og_description":"Workgroup Chair and co-Chair Chair: Pr Giovanni Mosiello(Rome) Co-chair: Jean-Marie Jouannic(Paris) Spinal dysraphisms are a group of rare congenital malformation syndromes that affect the baby\u2019s spine. Spina Bifida syndrome is a particular condition part of this broader cluster. This Workgroup focuses on improving care for both Spina Bifida syndrome and other kinds of spinal dysraphisms. […]","og_url":"https:\/\/ern-ithaca.eu\/it\/our-workgroups\/spina-bifida-other-dysraphisms\/","og_site_name":"ERN ITHACA","article_modified_time":"2024-10-28T14:22:08+00:00","og_image":[{"width":198,"height":255,"url":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Pr-Giovanni-Mosiello.jpeg","type":"image\/jpeg"}],"twitter_card":"summary_large_image","twitter_site":"@ERNIthaca","twitter_misc":{"Tempo di lettura stimato":"1 minuto"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/ern-ithaca.eu\/our-workgroups\/spina-bifida-other-dysraphisms\/","url":"https:\/\/ern-ithaca.eu\/our-workgroups\/spina-bifida-other-dysraphisms\/","name":"Spina Bifida & other Dysraphisms (WG13) - ERN ITHACA","isPartOf":{"@id":"https:\/\/ern-ithaca.eu\/#website"},"primaryImageOfPage":{"@id":"https:\/\/ern-ithaca.eu\/our-workgroups\/spina-bifida-other-dysraphisms\/#primaryimage"},"image":{"@id":"https:\/\/ern-ithaca.eu\/our-workgroups\/spina-bifida-other-dysraphisms\/#primaryimage"},"thumbnailUrl":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Pr-Giovanni-Mosiello.jpeg","datePublished":"2022-03-11T14:20:07+00:00","dateModified":"2024-10-28T14:22:08+00:00","breadcrumb":{"@id":"https:\/\/ern-ithaca.eu\/our-workgroups\/spina-bifida-other-dysraphisms\/#breadcrumb"},"inLanguage":"it-IT","potentialAction":[{"@type":"ReadAction","target":["https:\/\/ern-ithaca.eu\/our-workgroups\/spina-bifida-other-dysraphisms\/"]}]},{"@type":"ImageObject","inLanguage":"it-IT","@id":"https:\/\/ern-ithaca.eu\/our-workgroups\/spina-bifida-other-dysraphisms\/#primaryimage","url":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Pr-Giovanni-Mosiello.jpeg","contentUrl":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Pr-Giovanni-Mosiello.jpeg"},{"@type":"BreadcrumbList","@id":"https:\/\/ern-ithaca.eu\/our-workgroups\/spina-bifida-other-dysraphisms\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/ern-ithaca.eu\/"},{"@type":"ListItem","position":2,"name":"Our Workgroups","item":"https:\/\/ern-ithaca.eu\/our-workgroups\/"},{"@type":"ListItem","position":3,"name":"Spina Bifida & other Dysraphisms (WG13)"}]},{"@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":"it-IT"},{"@type":"Organization","@id":"https:\/\/ern-ithaca.eu\/#organization","name":"ERN-ITHACA","url":"https:\/\/ern-ithaca.eu\/","logo":{"@type":"ImageObject","inLanguage":"it-IT","@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\/it\/wp-json\/wp\/v2\/pages\/1597","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ern-ithaca.eu\/it\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/ern-ithaca.eu\/it\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/ern-ithaca.eu\/it\/wp-json\/wp\/v2\/users\/253"}],"replies":[{"embeddable":true,"href":"https:\/\/ern-ithaca.eu\/it\/wp-json\/wp\/v2\/comments?post=1597"}],"version-history":[{"count":19,"href":"https:\/\/ern-ithaca.eu\/it\/wp-json\/wp\/v2\/pages\/1597\/revisions"}],"predecessor-version":[{"id":6198,"href":"https:\/\/ern-ithaca.eu\/it\/wp-json\/wp\/v2\/pages\/1597\/revisions\/6198"}],"up":[{"embeddable":true,"href":"https:\/\/ern-ithaca.eu\/it\/wp-json\/wp\/v2\/pages\/6017"}],"wp:attachment":[{"href":"https:\/\/ern-ithaca.eu\/it\/wp-json\/wp\/v2\/media?parent=1597"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}