{"id":229,"date":"2022-02-07T14:58:23","date_gmt":"2022-02-07T13:58:23","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?page_id=229"},"modified":"2025-04-07T11:19:43","modified_gmt":"2025-04-07T09:19:43","slug":"neurodevelopmental-disorders","status":"publish","type":"page","link":"https:\/\/ern-ithaca.eu\/de\/our-workgroups\/neurodevelopmental-disorders\/","title":{"rendered":"Neuroentwicklungsst\u00f6rungen (WG5)"},"content":{"rendered":"

Vorsitzender und stellvertretender Vorsitzender der Arbeitsgruppe <\/h2>\n\n\n\n
\n
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\"\"<\/figure>\n<\/div>\n\n\n\n
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Dr. Tjitske Kleefstra<\/strong>
(Rotterdam)<\/p>\n<\/div>\n\n\n\n

\n
\"\"<\/figure>\n<\/div>\n\n\n\n
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Dr. Christiane Zweier <\/strong>
(Bern)<\/p>\n<\/div>\n<\/div>\n\n\n\n

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

Diese Arbeitsgruppe widmet sich dem Verbesserung des Wissens und des Verst\u00e4ndnisses seltener genetisch bedingter neurologischer Entwicklungsst\u00f6rungen<\/strong>, von denen es Tausende gibt, die jedoch gr\u00f6\u00dftenteils kaum bekannt sind. <\/p>\n\n\n\n

Es ist unterteilt in 4 Arbeitsgruppen<\/strong>: Die ersten beiden zielen darauf ab, Experten aus den jeweiligen Bereichen der geistigen Behinderung und der Psychiatrie miteinander zu vernetzen; die beiden anderen widmen sich konkreten Projekten: der Ausrichtung eines bisher beispiellosen europ\u00e4ischen Kongresses zu seltenen neurologischen Entwicklungsst\u00f6rungen sowie dem Aufbau einer speziell auf neurologische Entwicklungsst\u00f6rungen ausgerichteten Gendatenbank. <\/p>\n\n\n\n

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

Geistige Behinderungen (ID) und Autismus-Spektrum-St\u00f6rungen (ASD) <\/h2>\n\n\n\n

Die ID & ASD-Arbeitsgruppe m\u00f6chte ERN-ITHACA-Experten und Interessenvertreter zusammenbringen, die sich auf die Verbesserung des Versorgungsmanagements f\u00fcr Kinder mit schwerer geistiger Behinderung und \u00e4ltere Menschen, mit Schwerpunkt auf dem \u00dcbergang und dem Alltag<\/strong>. Ziel ist es, ein Umfeld der Zusammenarbeit zu schaffen, in dem die Teilnehmer ihre Ansichten und Ideen dar\u00fcber austauschen k\u00f6nnen, wie die Herausforderungen bew\u00e4ltigt werden k\u00f6nnen, denen Patienten mit schwerer geistiger Behinderung und \u00e4ltere Menschen bei der Gestaltung ihrer Versorgung gegen\u00fcberstehen.  <\/p>\n\n\n\n

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

Psychiatrie und Genetik  <\/h2>\n\n\n\n

Diese Arbeitsgruppe hat sich zum Ziel gesetzt, Experten aus den Bereichen Genetik und Psychopathologie zusammenzubringen, um das derzeitige Netzwerk zum Wissensaustausch zum Thema \u201cGenetik \u2013 Psychopathologie\u201d zu er\u00f6rtern und den Nutzen der Einrichtung einer eine nachhaltige europ\u00e4ische Plattform f\u00fcr den Austausch in diesen Bereichen<\/strong>. Dieses interne Netzwerk wird die Grundlage daf\u00fcr bilden, bew\u00e4hrte Verfahren aus einer interdisziplin\u00e4ren Perspektive \u2013 einschlie\u00dflich der Sichtweise von Experten aus eigener Erfahrung \u2013 auszutauschen und Ideen zu entwickeln, wie wir die Betreuung von Menschen verbessern k\u00f6nnen, die mit seltenen genetisch bedingten neurologischen Entwicklungsst\u00f6rungen leben und mit folgenden Herausforderungen konfrontiert sind: psychiatrische Herausforderungen<\/strong>.\u00a0<\/p>\n\n\n\n

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

EuroNDD <\/h2>\n\n\n\n

EuroNDD ist der erste EU-Workshop, der sich mit seltenen genetisch bedingten neurologischen Entwicklungsst\u00f6rungen befasst. Die Veranstaltung fand erstmals im Jahr 2023 statt und versammelte rund 250 Experten in Amsterdam, wo breit gefasste Themen im Zusammenhang mit NDD diskutiert wurden, darunter geistige Behinderung, Neuropsychiatrie, Datenaustausch und Register, \u00dcbergang in die Erwachsenenversorgung, therapeutische Entwicklungen und pr\u00e4klinische Forschung in Modellsystemen. Die zweite Ausgabe des Workshops fand vom 4. bis 5. April 2024 in Lissabon statt, und die dritte Ausgabe ist f\u00fcr 2026 in Warschau geplant.\u00a0<\/p>\n\n\n\n

Weitere Informationen zum Workshop: https:\/\/ern-ithaca.eu\/events\/eurondd\/<\/a>  <\/p>\n\n\n\n

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EuroNDD-Workshop 2024 \u2013 Lissabon, Portugal<\/em><\/p>\n<\/div>\n\n\n\n

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

SysNDD <\/h2>\n\n\n\n

SysNDD ist eine webbasierte Gendatenbank, die zu diagnostischen Zwecken genutzt werden kann. Sie enth\u00e4lt einen manuell gepflegten Katalog ver\u00f6ffentlichter Gene, die mit neurologischen Entwicklungsst\u00f6rungen (NDDs) in Verbindung stehen und je nach Grad der zugrunde liegenden Evidenz in Prim\u00e4r- und Kandidatengene unterteilt sind. Mit dieser Arbeitsgruppe m\u00f6chte ITHACA den Ausbau der Datenbank unterst\u00fctzen.  <\/p>\n\n\n\n

Weitere Informationen zu SysNDD: https:\/\/ern-ithaca.eu\/documentation\/sysndd\/<\/a>  <\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n
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Workgroup Chair and Co-Chair Dr Tjitske Kleefstra(Rotterdam) Dr Christiane Zweier (Berne) This workgroup is dedicated to the improvement of the knowledge and understanding of rare genetic neurodevelomental disorders, which number in the thousands but are poorly known for the most part. 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