{"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\/fr\/our-workgroups\/spina-bifida-other-dysraphisms\/","title":{"rendered":"Spina bifida et autres dysraphismes (WG13)"},"content":{"rendered":"

Pr\u00e9sident et copr\u00e9sident du groupe de travail <\/h2>\n\n\n\n
\n
\n
\"\"<\/figure>\n<\/div>\n\n\n\n
\n

Pr\u00e9sident : Pr Giovanni Mosiello
<\/strong>(Rome)<\/p>\n<\/div>\n\n\n\n

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

Copr\u00e9sident : Jean-Marie Jouannic
<\/strong><\/strong>(Paris)<\/p>\n<\/div>\n<\/div>\n\n\n\n

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

Dysraphismes spinaux<\/strong> Il s'agit d'un ensemble de syndromes de malformations cong\u00e9nitales rares qui touchent la colonne vert\u00e9brale du b\u00e9b\u00e9. Syndrome du spina bifida<\/strong> Une pathologie sp\u00e9cifique fait-elle partie de cet ensemble plus large ? Ce groupe de travail s'attache \u00e0 am\u00e9liorer la prise en charge tant du syndrome du spina bifida que d'autres types de dysraphismes spinaux.  <\/p>\n\n\n\n

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

Ces troubles n\u00e9cessitent une expertise pluridisciplinaire, qui rel\u00e8ve principalement de la comp\u00e9tence de deux r\u00e9seaux europ\u00e9ens de r\u00e9f\u00e9rence (ERN) : l\u2019ERN-ITHACA (syndromes malformatifs) et l\u2019eUROGEN (maladies urog\u00e9nitales). Le groupe de travail \u00ab Spina bifida et autres dysraphismes \u00bb (SBoD) a donc la particularit\u00e9 d\u2019\u00eatre un groupe de travail inter-ERN<\/strong>. Son objectif principal est la production de documents de soins pour les deux ERN. <\/p>\n\n\n\n

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

\u00c9laboration d'une d\u00e9claration de consensus d'experts sur le SBoD<\/h2>\n\n\n\n

Ce groupe de travail a r\u00e9uni une \u00e9quipe d'experts pluridisciplinaires issus des deux r\u00e9seaux europ\u00e9ens de r\u00e9f\u00e9rence (ERN) afin d'examiner les recommandations nationales existantes concernant les dysraphismes spinaux et de publier de nouvelles recommandations europ\u00e9ennes d\u00e9claration de consensus des experts<\/strong>. <\/p>\n\n\n\n

Il s'agira \u00e9galement d'\u00e9laborer, \u00e0 partir de cette expertise, un version en anglais facile \u00e0 comprendre destin\u00e9e aux patients<\/strong>, et de fournir des traductions de ce document dans d'autres langues europ\u00e9ennes, afin de rendre ces informations aussi accessibles que possible. <\/p>\n\n\n\n

Pour en savoir plus sur les d\u00e9clarations de consensus d'experts et les recommandations, vous pouvez consulter notre page web consacr\u00e9e \u00e0 ce sujet sur le Groupe de travail sur les lignes directrices ERN-ITHACA<\/a>. <\/p>\n\n\n\n

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

\u00c9laboration d'autres documents relatifs aux soins pour le SBoD<\/h2>\n\n\n\n

Ce groupe de travail s'efforce de diffuser les connaissances m\u00e9dicales sur le spina bifida et les troubles associ\u00e9s en fournissant de nouvelles Orphacodes<\/strong> pour les dysraphismes spinaux (voir notre page sur Orphanet<\/a>), et en d\u00e9veloppant le Ontologie du ph\u00e9notype humain<\/strong> base de donn\u00e9es contenant de nouvelles descriptions de ph\u00e9notypes f\u0153taux (voir \u00ab Qu'est-ce que le \u00bb Projet \u00ab Human Phenotype Ontology \u00bb<\/a>).<\/p>\n\n\n\n

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

Chirurgie f\u0153tale <\/h2>\n\n\n\n

Les anomalies de la colonne vert\u00e9brale pouvant \u00eatre d\u00e9tect\u00e9es, voire parfois trait\u00e9es, avant la naissance, ce groupe de travail comprend une \u00e9quipe charg\u00e9e de faciliter l'acc\u00e8s \u00e0 la chirurgie f\u0153tale.<\/p>\n\n\n\n

Ce groupe de travail s'efforce d'identifier et de recenser les centres du r\u00e9seau ITHACA disposant d'une expertise en chirurgie f\u0153tale<\/strong>. Cette liste sera utile aux professionnels de sant\u00e9, ainsi qu'aux patients et \u00e0 leurs proches.<\/p>\n\n\n\n

Elle pr\u00e9voit \u00e9galement d'adopter une ensemble de donn\u00e9es sp\u00e9cifique pour<\/strong> des descriptions pr\u00e9natales et postnatales des dysraphismes spinaux, y compris un ensemble de donn\u00e9es relatives \u00e0 la chirurgie f\u0153tale, ainsi que le suivi des patients atteints de SBoD figurant dans la base de donn\u00e9es. Ce projet s'inscrit dans le cadre du m\u00e9ta-registre ILIAD, que vous pouvez d\u00e9couvrir ici :<\/p>\n\n\n\n

Nous organiserons \u00e9galement un nouveau atelier destin\u00e9 aux professionnels intervenant dans le domaine de la chirurgie f\u0153tale<\/strong> pour se rencontrer, discuter et \u00e9changer des connaissances.<\/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. 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