{"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\/es\/our-workgroups\/spina-bifida-other-dysraphisms\/","title":{"rendered":"Espina b\u00edfida y otros disrafismos (WG13)"},"content":{"rendered":"

Presidente y copresidente del grupo de trabajo <\/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>(Par\u00eds)<\/p>\n<\/div>\n<\/div>\n\n\n\n

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

Disrafismos espinales<\/strong> Son un grupo de s\u00edndromes de malformaciones cong\u00e9nitas poco frecuentes que afectan a la columna vertebral del beb\u00e9. S\u00edndrome de espina b\u00edfida<\/strong> \u00bfForma parte esta afecci\u00f3n concreta de este grupo m\u00e1s amplio? Este grupo de trabajo se centra en mejorar la atenci\u00f3n tanto del s\u00edndrome de espina b\u00edfida como de otros tipos de disrafismos espinales.  <\/p>\n\n\n\n

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

Estos trastornos requieren conocimientos especializados multidisciplinares, que se enmarcan principalmente en el \u00e1mbito de dos ERN: la ERN-ITHACA (s\u00edndromes malformativos) y la eUROGEN (enfermedades urogenitales). El Grupo de Trabajo sobre la espina b\u00edfida y otros disrafismos (SBoD) tiene, por tanto, la particularidad de ser un grupo de trabajo inter-ERN<\/strong>. Su objetivo principal es la elaboraci\u00f3n de documentos de atenci\u00f3n para ambas redes europeas de referencia (ERN). <\/p>\n\n\n\n

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

Elaboraci\u00f3n de una declaraci\u00f3n de consenso de expertos sobre el SBoD<\/h2>\n\n\n\n

Este grupo de trabajo ha reunido a un equipo de expertos multidisciplinares de las dos redes europeas de referencia (ERN) para revisar las recomendaciones nacionales existentes sobre los disrafismos espinales y para publicar una nueva gu\u00eda europea declaraci\u00f3n de consenso de expertos<\/strong>. <\/p>\n\n\n\n

Tambi\u00e9n se encargar\u00e1 de elaborar, a partir de este informe pericial, un versi\u00f3n en ingl\u00e9s de f\u00e1cil comprensi\u00f3n para los pacientes<\/strong>, y facilitar traducciones de este documento a otras lenguas europeas, con el fin de que la informaci\u00f3n sea lo m\u00e1s accesible posible. <\/p>\n\n\n\n

Para obtener m\u00e1s informaci\u00f3n sobre las declaraciones de consenso de expertos y las gu\u00edas cl\u00ednicas, puedes visitar nuestra p\u00e1gina web sobre el Grupo de trabajo sobre las directrices ERN-ITHACA<\/a>. <\/p>\n\n\n\n

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

Elaboraci\u00f3n de otros documentos de atenci\u00f3n para SBoD<\/h2>\n\n\n\n

Este grupo de trabajo se dedica a difundir conocimientos m\u00e9dicos sobre la espina b\u00edfida y los trastornos asociados, proporcionando nueva Orphacodes<\/strong> en el caso de las disrafias espinales (consulta nuestra p\u00e1gina sobre Orphanet<\/a>), y ampliando el Ontolog\u00eda del fenotipo humano<\/strong> base de datos con nuevas descripciones de fenotipos fetales (v\u00e9ase \u00ab\u00bfQu\u00e9 es el...?\u00bb Proyecto \u00abOntolog\u00eda del Fenotipo Humano\u00bb<\/a>).<\/p>\n\n\n\n

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

Cirug\u00eda fetal <\/h2>\n\n\n\n

Dado que los defectos de la columna vertebral pueden detectarse y, en ocasiones, tratarse antes del nacimiento, este grupo de trabajo cuenta con un equipo de trabajo dedicado a facilitar el acceso a la cirug\u00eda fetal.<\/p>\n\n\n\n

Este grupo de trabajo se dedica a identificar y identificar qu\u00e9 centros de la red ITHACA cuentan con experiencia en cirug\u00eda fetal<\/strong>. Esta lista resultar\u00e1 de ayuda tanto para los profesionales sanitarios como para los propios pacientes y sus familias.<\/p>\n\n\n\n

Tambi\u00e9n tiene previsto adoptar una conjunto de datos espec\u00edfico para<\/strong> descripciones prenatales y posnatales de las disrafias espinales, incluido un conjunto de datos para la cirug\u00eda fetal, y sobre el seguimiento de los pacientes con SBoD en la base de datos. Este proyecto forma parte del metarregistro ILIAD, que puedes consultar aqu\u00ed:<\/p>\n\n\n\n

Tambi\u00e9n organizaremos un nuevo taller dirigido a profesionales del \u00e1mbito de la cirug\u00eda fetal<\/strong> para reunirse, debatir e intercambiar conocimientos.<\/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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