{"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\/es\/about-us\/expert-centers\/ern-ithaca-odense-center\/","title":{"rendered":"ERN-ITHACA \u2013 Centro de Odense"},"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

\n
P\u00e1gina web<\/a><\/div>\n<\/div>\n\n\n\n
<\/div>\n\n\n\n

Plomo<\/h2>\n\n\n\n
\n
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\"\"<\/figure>\n<\/div>\n\n\n\n
\n

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

\u00c1mbito de aplicaci\u00f3n<\/h2>\n\n\n\n

El \u00e1mbito de especializaci\u00f3n de nuestro centro, como miembro de la Red Europea de Referencia (ERN) ITHACA, abarca todos los s\u00edndromes que presentan anomal\u00edas del desarrollo y\/o discapacidad intelectual (DI). Aproximadamente 1 de cada 40 reci\u00e9n nacidos presenta una malformaci\u00f3n cong\u00e9nita (261 de cada 10 000 fetos y reci\u00e9n nacidos, seg\u00fan los informes de EuroCAt), y 1 de cada 40 presenta DI. Por lo tanto, entre 3 y 5 % de todos los nacimientos humanos presentan o desarrollar\u00e1n una anomal\u00eda del desarrollo, de las cuales al menos entre 25 y 50 % son de origen gen\u00e9tico o gen\u00f3mico. Esta enorme poblaci\u00f3n representa, en realidad, la yuxtaposici\u00f3n de un n\u00famero muy elevado de trastornos raros a nivel individual que presentan una diversidad extrema de causas y fenotipos. La competencia y el \u00e1mbito de especializaci\u00f3n de este centro ITHACA incluyen:<\/p>\n\n\n\n

  • m\u00e1s de 5.500 s\u00edndromes dism\u00f3rficos y de anomal\u00edas cong\u00e9nitas m\u00faltiples (MCA) (recogidos en la Base de Datos de Dismorfolog\u00eda de Londres), entre los que se incluyen m\u00e1s de 3.000 enfermedades monog\u00e9nicas, todas las anomal\u00edas cromos\u00f3micas (la mayor\u00eda de ellas solo detectables mediante tecnolog\u00edas de microarrays), anomal\u00edas dism\u00f3rficas multifactoriales y espor\u00e1dicas, y embriopat\u00edas de origen ambiental<\/li>
  • >1.500 formas monog\u00e9nicas y cientos de formas cromos\u00f3micas de discapacidad intelectual, con o sin trastorno del espectro autista (TEA) asociado<\/li><\/ul>\n\n\n\n
    <\/div>\n\n\n\n

    Atenci\u00f3n a los pacientes<\/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

    Organizaci\u00f3n del centro<\/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\/es\/about-us\/expert-centers\/ern-ithaca-odense-center\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\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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