{"id":373,"date":"2022-02-08T11:39:15","date_gmt":"2022-02-08T10:39:15","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?post_type=expert-centers&p=373"},"modified":"2022-05-16T14:38:09","modified_gmt":"2022-05-16T12:38:09","slug":"ern-ithaca-odense-center","status":"publish","type":"expert-centers","link":"https:\/\/ern-ithaca.eu\/de\/about-us\/expert-centers\/ern-ithaca-odense-center\/","title":{"rendered":"ERN-ITHACA \u2013 Odense Center"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

Odense University Hospital<\/strong>
J. B. Winsl\u00f8ws Vej 4,
5000 Odense
DENMARK<\/p>\n\n\n\n

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Website<\/a><\/div>\n<\/div>\n\n\n\n
<\/div>\n\n\n\n

Blei<\/h2>\n\n\n\n
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\"\"<\/figure>\n<\/div>\n\n\n\n
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Dr Lilian Bomme Ousager <\/p>\n\n\n\n

Telephone:<\/strong>  +45 65411725<\/p>\n\n\n\n

Email Address:<\/strong> ode.kga@rsyd.dk<\/p>\n<\/div>\n<\/div>\n\n\n\n

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

Geltungsbereich<\/h2>\n\n\n\n

Das Fachgebiet unseres Zentrums als Mitglied des europ\u00e4ischen Referenznetzwerks (ERN) \u201eITHACA\u201c umfasst alle Syndrome, die mit Entwicklungsst\u00f6rungen und\/oder einer geistigen Behinderung (ID) einhergehen. Etwa 1 von 40 Neugeborenen weist eine angeborene Fehlbildung auf (261 von 10.000 F\u00f6ten und Neugeborenen laut EuroCAt-Berichten), und 1 von 40 leidet unter einer geistigen Behinderung. Daher weisen 3 bis 5 von % aller Geburten eine Entwicklungsanomalie auf oder werden eine solche entwickeln, von denen mindestens 25\u201350 von % genetischen oder genomischen Ursprungs sind. Diese riesige Population stellt in Wirklichkeit eine Ansammlung einer sehr gro\u00dfen Anzahl von einzeln seltenen Erkrankungen dar, die eine extreme Vielfalt an Ursachen und Ph\u00e4notypen aufweisen. Der Zust\u00e4ndigkeitsbereich und das Fachgebiet dieses ITHACA-Zentrums umfassen:<\/p>\n\n\n\n

  • \u00fcber 5.500 dysmorphe und multiple angeborene Anomalien (MCA) (aufgef\u00fchrt in der London Dysmorphology Database), darunter \u00fcber 3.000 monogene Erkrankungen, alle Chromosomenanomalien (von denen die meisten nur mittels Array-Technologien nachweisbar sind), multifaktorielle, sporadische dysmorphologische Anomalien sowie Embryo-Fetopathien umweltbedingten Ursprungs<\/li>
  • >1.500 monogene und Hunderte chromosomale Formen der geistigen Behinderung mit oder ohne begleitende Autismus-Spektrum-St\u00f6rung (ASD)<\/li><\/ul>\n\n\n\n
    <\/div>\n\n\n\n

    Dienst am Patienten<\/h2>\n\n\n\n

    Odense University Hospital (OUH) is the largest and most specialised hospital in the Region of Southern Denmark (RSD) and it is one of the largest education and training centers in the region, closely collaborating with the University of Southern Denmark (SDU). Many of the experts at our Center are also appointed at SDU. The hospital has extensive state-of-the-art facilities and all medical specialities are present at the hospital. Patient care is focused on improved patient involvement and individualized treatment.<\/p>\n\n\n\n

    The hospital has established a Center for Rare and Complex Diseases (CAKS). It is organized as a network of multidisciplinary teams led by a steering comity. The main purpose is to coordinate and adjust surveillance programs for patients with rare diseases. All specialties have a \u2018rare disease co-ordinator\u2019 appointed responsible for assignment of members for each disease specific multidisciplinary team (MDT). Each MDT is responsible for patient care and local guidelines for the particular relevant rare disease.<\/p>\n\n\n\n

    The H. C. Andersen Children\u2019s Hospital at OUH is the primary paediatric department for patients from Funen. Approved by the national health authorities, the department has regional and highly specialized functions for the entire RSD (1,27 million inhabitants) in paediatric areas such as gastroenterology, neonatology, endocrinology, nephrology, neurology, cardiology, and social paediatrics. OUH has all specialists required in care for children with rare diseases including cross-disciplinary teams of physicians, nurses, psychologists, social advisors, physiotherapists, occupational therapists, dieticians and others depending on the nature of the tasks (i.e. radiologists and neuroradiologists, pathologists, psychiatrists). There is a close collaboration with the experts at the Department of Clinical Genetics in diagnostics, genetic counselling, and follow up on the patients.<\/p>\n\n\n\n

    Department of Clinical Genetic provide genetic counselling and has regional function for the area of Funen, highly specialized functions for RSD and for some rare diseases, nationally. The CAKS initiative is hosted by the department. The laboratory is ISO 15 189 accredited and performs pre- and postnatal exome\/genome sequencing as well as a large number of other molecular and cytogenetic analysis. The department has a wide research interest in rare diseases and host a core research facility center, Clinical Genome Center.<\/p>\n\n\n\n

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

    Organisation des Zentrums<\/h2>\n\n\n\n

    OUH offers patients with rare diseases clinical evaluation and diagnostic consultations, genetic counselling, genetic testing, familial screening, prenatal diagnosis, patient treatment, follow up and coordination of the medical care as well as education of patients in their own rare disease.<\/p>\n\n\n\n

    We focus on patient involvement and individualized treatment and have three closely coordinated services to attend patients with rare and genetic disorders: The Center for Rare and Complex Diseases, the H.C. Andersen\u2019s Children\u2019s Hospital, and the Department of Clinical Genetic. Together we put our effort into state-of the-art diagnosis, management and treatment of rare diseases trough close collaboration facilitated by having the centers and all specializations at the same location.<\/p>\n\n\n\n

    Our mission is to put the patient first and for patient with rare disease this means that we strive to design and deliver care based on the needs and choices of each patient.<\/p>","protected":false},"featured_media":0,"template":"","tags":[],"country":[53],"center-status":[15],"class_list":["post-373","expert-centers","type-expert-centers","status-publish","hentry","country-denmark","center-status-full-member"],"acf":{"name-city":"Odense Center","representative":"Pr Dr Lilian Bomme Ousager","latitude":"55.403756 ","longitude":"10.402370","keywords-search":""},"yoast_head":"\nERN-ITHACA \u2013 Odense Center - 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\/de\/about-us\/expert-centers\/ern-ithaca-odense-center\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ERN-ITHACA \u2013 Odense Center - ERN ITHACA\" \/>\n<meta property=\"og:description\" content=\"Odense University HospitalJ. 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