{"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\/de\/our-workgroups\/spina-bifida-other-dysraphisms\/","title":{"rendered":"Spina bifida und andere Dysraphien (WG13)"},"content":{"rendered":"

Vorsitzender und stellvertretender Vorsitzender der Arbeitsgruppe <\/h2>\n\n\n\n
\n
\n
\"\"<\/figure>\n<\/div>\n\n\n\n
\n

Vorsitzender: Prof. Giovanni Mosiello
<\/strong>(Rom)<\/p>\n<\/div>\n\n\n\n

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

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

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

Spinale Dysraphien<\/strong> sind eine Gruppe seltener angeborener Fehlbildungssyndrome, die die Wirbels\u00e4ule des Babys betreffen. Spina-bifida-Syndrom<\/strong> Ist eine bestimmte Erkrankung Teil dieser umfassenderen Gruppe? Diese Arbeitsgruppe konzentriert sich auf die Verbesserung der Versorgung sowohl beim Spina-bifida-Syndrom als auch bei anderen Formen von Spinaldysraphien.  <\/p>\n\n\n\n

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

Diese Erkrankungen erfordern multidisziplin\u00e4res Fachwissen, das haupts\u00e4chlich in den Zust\u00e4ndigkeitsbereich zweier ERNs f\u00e4llt: ERN-ITHACA (Fehlbildungssyndrome) und eUROGEN (urogenitale Erkrankungen). Die Arbeitsgruppe \u201eSpina bifida und andere Dysraphien\u201c (SBoD) zeichnet sich daher dadurch aus, dass sie eine ERN-\u00fcbergreifende Arbeitsgruppe<\/strong>. Der Schwerpunkt liegt auf der Erstellung von Pflegedokumenten f\u00fcr beide ERNs. <\/p>\n\n\n\n

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

Erstellung einer Konsenserkl\u00e4rung von Experten zum Thema SBoD<\/h2>\n\n\n\n

Diese Arbeitsgruppe hat eine Gruppe interdisziplin\u00e4rer Experten aus den beiden ERNs einberufen, um die bestehenden nationalen Empfehlungen zu Spinaldysraphien zu \u00fcberpr\u00fcfen und neue europ\u00e4ische Expertenkonsens-Stellungnahme<\/strong>. <\/p>\n\n\n\n

Au\u00dferdem wird daran gearbeitet, auf der Grundlage dieses Gutachtens eine leicht verst\u00e4ndliche englische Fassung f\u00fcr Patienten<\/strong>, sowie \u00dcbersetzungen dieses Dokuments in andere europ\u00e4ische Sprachen bereitzustellen, um die Informationen einem m\u00f6glichst breiten Publikum zug\u00e4nglich zu machen. <\/p>\n\n\n\n

Wenn Sie mehr \u00fcber Konsensaussagen und Leitlinien von Experten erfahren m\u00f6chten, besuchen Sie unsere Webseite zum Thema Arbeitsgruppe \u201eERN-ITHACA-Leitlinie\u201c<\/a>. <\/p>\n\n\n\n

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

Erstellung weiterer Betreuungsunterlagen f\u00fcr den SBoD<\/h2>\n\n\n\n

Diese Arbeitsgruppe setzt sich daf\u00fcr ein, medizinisches Wissen \u00fcber Spina bifida und damit verbundene Erkrankungen zu verbreiten, indem sie neue Orphacodes<\/strong> bei Spinaldysraphien (siehe unsere Seite zu Orphanet<\/a>) sowie durch die Erweiterung der Ontologie des menschlichen Ph\u00e4notyps<\/strong> Datenbank mit neuen Beschreibungen fetaler Ph\u00e4notypen (siehe \u201eWas ist der Projekt \u201eHuman Phenotype Ontology\u201c<\/a>).<\/p>\n\n\n\n

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

F\u00f6tale Chirurgie <\/h2>\n\n\n\n

Da Wirbels\u00e4ulendefekte bereits vor der Geburt erkennbar und manchmal behandelbar sind, umfasst diese Arbeitsgruppe eine Taskforce, die sich daf\u00fcr einsetzt, den Zugang zur F\u00f6talchirurgie zu erleichtern.<\/p>\n\n\n\n

Diese Arbeitsgruppe arbeitet daran, \u2026 zu ermitteln und Ermitteln, welche Zentren innerhalb des ITHACA-Netzwerks \u00fcber Fachkenntnisse im Bereich der F\u00f6talchirurgie verf\u00fcgen<\/strong>. Diese Liste wird sowohl f\u00fcr medizinisches Fachpersonal als auch f\u00fcr Patienten und deren Angeh\u00f6rige eine Hilfe sein.<\/p>\n\n\n\n

Au\u00dferdem ist geplant, eine spezieller Datensatz f\u00fcr<\/strong> pr\u00e4natale und postnatale Beschreibungen von Spinaldysraphien, einschlie\u00dflich eines Datensatzes zur fetalen Chirurgie, sowie zur Nachsorge von SBoD-Patienten in der Datenbank. Dieses Projekt ist Teil des ILIAD-Metaregisters, das Sie hier einsehen k\u00f6nnen:<\/p>\n\n\n\n

Au\u00dferdem werden wir eine neue Workshop f\u00fcr Fachleute aus dem Bereich der F\u00f6talchirurgie<\/strong> um sich zu treffen, zu diskutieren und Wissen auszutauschen.<\/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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