{"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\/fr\/about-us\/expert-centers\/ern-ithaca-odense-center\/","title":{"rendered":"ERN-ITHACA \u2013 Centre d'Odense"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

H\u00f4pital universitaire d'Odense<\/strong>
4, rue J. B. Winsl\u00f8w,
5 000 Odense
DANEMARK<\/p>\n\n\n\n

\n
Site web<\/a><\/div>\n<\/div>\n\n\n\n
<\/div>\n\n\n\n

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

Dr Lilian Bomme Ousager <\/p>\n\n\n\n

T\u00e9l\u00e9phone :<\/strong>  +45 65411725<\/p>\n\n\n\n

Adresse e-mail :<\/strong> ode.kga@rsyd.dk<\/p>\n<\/div>\n<\/div>\n\n\n\n

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

Champ d'application<\/h2>\n\n\n\n

En tant que membre du R\u00e9seau europ\u00e9en de r\u00e9f\u00e9rence (ERN) ITHACA, notre centre est sp\u00e9cialis\u00e9 dans tous les syndromes se caract\u00e9risant par des anomalies du d\u00e9veloppement et\/ou une d\u00e9ficience intellectuelle (DI). Environ 1 nouveau-n\u00e9 sur 40 pr\u00e9sente une malformation cong\u00e9nitale (261 pour 10 000 f\u0153tus et nouveau-n\u00e9s selon les rapports EuroCAt), et 1 sur 40 est atteint de d\u00e9ficience intellectuelle. Par cons\u00e9quent, 3 \u00e0 5 % de toutes les naissances humaines pr\u00e9sentent ou d\u00e9velopperont une anomalie du d\u00e9veloppement, parmi lesquelles au moins 25 \u00e0 50 % sont d\u2019origine g\u00e9n\u00e9tique ou g\u00e9nomique. Cette population consid\u00e9rable repr\u00e9sente en r\u00e9alit\u00e9 la juxtaposition d\u2019un tr\u00e8s grand nombre de troubles individuellement rares pr\u00e9sentant une extr\u00eame diversit\u00e9 de causes et de ph\u00e9notypes. Le champ d\u2019action et le p\u00e9rim\u00e8tre d\u2019expertise de ce centre ITHACA comprennent :<\/p>\n\n\n\n

  • plus de 5 500 syndromes dysmorphiques et anomalies cong\u00e9nitales multiples (MCA) (r\u00e9pertori\u00e9s dans la base de donn\u00e9es de dysmorphologie de Londres), parmi lesquels plus de 3 000 maladies monog\u00e9niques, toutes les anomalies chromosomiques (dont la plupart ne sont d\u00e9tectables que gr\u00e2ce aux technologies de puces \u00e0 ADN), des anomalies dysmorphologiques multifactorielles et sporadiques, ainsi que des embryof\u00e9topathies d\u2019origine environnementale<\/li>
  • >1 500 formes monog\u00e9niques et plusieurs centaines de formes chromosomiques de d\u00e9ficience intellectuelle, associ\u00e9es ou non \u00e0 un trouble du spectre autistique (TSA)<\/li><\/ul>\n\n\n\n
    <\/div>\n\n\n\n

    Service aux patients<\/h2>\n\n\n\n

    L'h\u00f4pital universitaire d'Odense (OUH) est l'h\u00f4pital le plus grand et le plus sp\u00e9cialis\u00e9 de la r\u00e9gion du Danemark du Sud (RSD) ; c'est \u00e9galement l'un des plus grands centres d'enseignement et de formation de la r\u00e9gion, qui collabore \u00e9troitement avec l'Universit\u00e9 du Danemark du Sud (SDU). De nombreux experts de notre centre sont \u00e9galement rattach\u00e9s \u00e0 la SDU. L'h\u00f4pital dispose d'installations de pointe tr\u00e8s compl\u00e8tes et toutes les sp\u00e9cialit\u00e9s m\u00e9dicales y sont repr\u00e9sent\u00e9es. Les soins prodigu\u00e9s aux patients mettent l'accent sur une implication accrue de ces derniers et sur des traitements personnalis\u00e9s.<\/p>\n\n\n\n

    L'h\u00f4pital a mis en place un Centre des maladies rares et complexes (CAKS). Celui-ci est organis\u00e9 sous la forme d'un r\u00e9seau d'\u00e9quipes pluridisciplinaires dirig\u00e9es par un comit\u00e9 de pilotage. Son objectif principal est de coordonner et d'adapter les programmes de suivi des patients atteints de maladies rares. Chaque sp\u00e9cialit\u00e9 dispose d\u2019un \u2018 coordinateur des maladies rares \u2019 charg\u00e9 de d\u00e9signer les membres de chaque \u00e9quipe pluridisciplinaire (EPD) sp\u00e9cifique \u00e0 une maladie donn\u00e9e. Chaque EPD est responsable de la prise en charge des patients et de l\u2019application des recommandations locales relatives \u00e0 la maladie rare concern\u00e9e.<\/p>\n\n\n\n

    L'h\u00f4pital p\u00e9diatrique H. C. Andersen de l'OUH est le principal service p\u00e9diatrique pour les patients de Fionie. Agr\u00e9e par les autorit\u00e9s sanitaires nationales, ce service assure des missions r\u00e9gionales et hautement sp\u00e9cialis\u00e9es pour l\u2019ensemble de la r\u00e9gion RSD (1,27 million d\u2019habitants) dans des domaines p\u00e9diatriques tels que la gastro-ent\u00e9rologie, la n\u00e9onatologie, l\u2019endocrinologie, la n\u00e9phrologie, la neurologie, la cardiologie et la p\u00e9diatrie sociale. L\u2019OUH dispose de tous les sp\u00e9cialistes n\u00e9cessaires \u00e0 la prise en charge des enfants atteints de maladies rares, notamment des \u00e9quipes pluridisciplinaires compos\u00e9es de m\u00e9decins, d\u2019infirmiers, de psychologues, de conseillers sociaux, de kin\u00e9sith\u00e9rapeutes, d\u2019ergoth\u00e9rapeutes, de di\u00e9t\u00e9ticiens et d\u2019autres professionnels en fonction de la nature des missions (par exemple, radiologues et neuroradiologues, pathologistes, psychiatres). Une \u00e9troite collaboration est mise en place avec les experts du service de g\u00e9n\u00e9tique clinique pour le diagnostic, le conseil g\u00e9n\u00e9tique et le suivi des patients.<\/p>\n\n\n\n

    Le service de g\u00e9n\u00e9tique clinique propose des consultations g\u00e9n\u00e9tiques et assure une mission r\u00e9gionale pour la r\u00e9gion de Fionie, ainsi que des missions hautement sp\u00e9cialis\u00e9es au niveau national pour le RSD et certaines maladies rares. L'initiative CAKS est h\u00e9berg\u00e9e par le service. Le laboratoire est accr\u00e9dit\u00e9 ISO 15 189 et r\u00e9alise des s\u00e9quen\u00e7ages d'exomes et de g\u00e9nomes pr\u00e9nataux et postnataux, ainsi qu'un grand nombre d'autres analyses mol\u00e9culaires et cytog\u00e9n\u00e9tiques. Le service m\u00e8ne des recherches approfondies sur les maladies rares et h\u00e9berge un centre de recherche de r\u00e9f\u00e9rence, le Centre de g\u00e9nomique clinique.<\/p>\n\n\n\n

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

    Organisation du centre<\/h2>\n\n\n\n

    L'OUH propose aux patients atteints de maladies rares des \u00e9valuations cliniques et des consultations diagnostiques, un accompagnement g\u00e9n\u00e9tique, des tests g\u00e9n\u00e9tiques, un d\u00e9pistage familial, un diagnostic pr\u00e9natal, la prise en charge th\u00e9rapeutique, le suivi et la coordination des soins m\u00e9dicaux, ainsi qu'une information des patients sur leur propre maladie rare.<\/p>\n\n\n\n

    Nous mettons l'accent sur l'implication des patients et sur une prise en charge personnalis\u00e9e, et disposons de trois services \u00e9troitement coordonn\u00e9s pour prendre en charge les patients atteints de maladies rares et g\u00e9n\u00e9tiques : le Centre des maladies rares et complexes, l'H\u00f4pital p\u00e9diatrique H.C. Andersen et le Service de g\u00e9n\u00e9tique clinique. Ensemble, nous consacrons nos efforts au diagnostic, \u00e0 la prise en charge et au traitement de pointe des maladies rares, gr\u00e2ce \u00e0 une collaboration \u00e9troite facilit\u00e9e par la pr\u00e9sence, sur un m\u00eame site, de ces centres et de toutes les sp\u00e9cialit\u00e9s concern\u00e9es.<\/p>\n\n\n\n

    Notre mission est de donner la priorit\u00e9 au patient ; pour les patients atteints d'une maladie rare, cela signifie que nous nous effor\u00e7ons de concevoir et de prodiguer des soins adapt\u00e9s aux besoins et aux choix de chacun d'entre eux.<\/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\/fr\/about-us\/expert-centers\/ern-ithaca-odense-center\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\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. B. Winsl\u00f8ws Vej 4, 5000 OdenseDENMARK Lead Dr Lilian Bomme Ousager Telephone:  +45 65411725 Email Address: ode.kga@rsyd.dk Scope The area of expertise of our Centre, as member of the ITHACA European Reference Network (ERN), covers all syndromes exhibiting developmental anomalies and\/or intellectual disability (ID). About 1\/40 newborn has a congenital malformation (261\/10000 […]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/ern-ithaca.eu\/fr\/about-us\/expert-centers\/ern-ithaca-odense-center\/\" \/>\n<meta property=\"og:site_name\" content=\"ERN ITHACA\" \/>\n<meta property=\"article:modified_time\" content=\"2022-05-16T12:38:09+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/04\/HCP-Odense_OUH-1900x1095.jpg\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:site\" content=\"@ERNIthaca\" \/>\n<meta name=\"twitter:label1\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data1\" content=\"4 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/about-us\\\/expert-centers\\\/ern-ithaca-odense-center\\\/\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/about-us\\\/expert-centers\\\/ern-ithaca-odense-center\\\/\",\"name\":\"ERN-ITHACA \u2013 Odense Center - ERN ITHACA\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/about-us\\\/expert-centers\\\/ern-ithaca-odense-center\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/about-us\\\/expert-centers\\\/ern-ithaca-odense-center\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2022\\\/04\\\/HCP-Odense_OUH-1900x1095.jpg\",\"datePublished\":\"2022-02-08T10:39:15+00:00\",\"dateModified\":\"2022-05-16T12:38:09+00:00\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/about-us\\\/expert-centers\\\/ern-ithaca-odense-center\\\/#breadcrumb\"},\"inLanguage\":\"fr-FR\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/ern-ithaca.eu\\\/about-us\\\/expert-centers\\\/ern-ithaca-odense-center\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/about-us\\\/expert-centers\\\/ern-ithaca-odense-center\\\/#primaryimage\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2022\\\/04\\\/HCP-Odense_OUH-1900x1095.jpg\",\"contentUrl\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2022\\\/04\\\/HCP-Odense_OUH-1900x1095.jpg\"},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/about-us\\\/expert-centers\\\/ern-ithaca-odense-center\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\\\/\\\/ern-ithaca.eu\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"About us > Our EU expert centers\",\"item\":\"https:\\\/\\\/ern-ithaca.eu\\\/about-us\\\/expert-centers\\\/\"},{\"@type\":\"ListItem\",\"position\":3,\"name\":\"ERN-ITHACA \u2013 Odense Center\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#website\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/\",\"name\":\"ERN ITHACA\",\"description\":\"WELCOME TO ERN-ITHACA WEBSITE!\",\"publisher\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/ern-ithaca.eu\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"fr-FR\"},{\"@type\":\"Organization\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#organization\",\"name\":\"ERN-ITHACA\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#\\\/schema\\\/logo\\\/image\\\/\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2022\\\/02\\\/Logo-ERN-ITHACA.jpg\",\"contentUrl\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2022\\\/02\\\/Logo-ERN-ITHACA.jpg\",\"width\":454,\"height\":172,\"caption\":\"ERN-ITHACA\"},\"image\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#\\\/schema\\\/logo\\\/image\\\/\"},\"sameAs\":[\"https:\\\/\\\/x.com\\\/ERNIthaca\",\"https:\\\/\\\/www.linkedin.com\\\/company\\\/ithaca-european-reference-network-on-congenital-malformations-ans-rare-intellectual-disability\\\/?viewAsMember=true\"]}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"ERN-ITHACA \u2013 Odense Center - ERN ITHACA","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/ern-ithaca.eu\/fr\/about-us\/expert-centers\/ern-ithaca-odense-center\/","og_locale":"fr_FR","og_type":"article","og_title":"ERN-ITHACA \u2013 Odense Center - ERN ITHACA","og_description":"Odense University HospitalJ. B. Winsl\u00f8ws Vej 4, 5000 OdenseDENMARK Lead Dr Lilian Bomme Ousager Telephone:  +45 65411725 Email Address: ode.kga@rsyd.dk Scope The area of expertise of our Centre, as member of the ITHACA European Reference Network (ERN), covers all syndromes exhibiting developmental anomalies and\/or intellectual disability (ID). About 1\/40 newborn has a congenital malformation (261\/10000 […]","og_url":"https:\/\/ern-ithaca.eu\/fr\/about-us\/expert-centers\/ern-ithaca-odense-center\/","og_site_name":"ERN ITHACA","article_modified_time":"2022-05-16T12:38:09+00:00","og_image":[{"url":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/04\/HCP-Odense_OUH-1900x1095.jpg","type":"","width":"","height":""}],"twitter_card":"summary_large_image","twitter_site":"@ERNIthaca","twitter_misc":{"Dur\u00e9e de lecture estim\u00e9e":"4 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/ern-ithaca.eu\/about-us\/expert-centers\/ern-ithaca-odense-center\/","url":"https:\/\/ern-ithaca.eu\/about-us\/expert-centers\/ern-ithaca-odense-center\/","name":"ERN-ITHACA \u2013 Odense Center - ERN ITHACA","isPartOf":{"@id":"https:\/\/ern-ithaca.eu\/#website"},"primaryImageOfPage":{"@id":"https:\/\/ern-ithaca.eu\/about-us\/expert-centers\/ern-ithaca-odense-center\/#primaryimage"},"image":{"@id":"https:\/\/ern-ithaca.eu\/about-us\/expert-centers\/ern-ithaca-odense-center\/#primaryimage"},"thumbnailUrl":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/04\/HCP-Odense_OUH-1900x1095.jpg","datePublished":"2022-02-08T10:39:15+00:00","dateModified":"2022-05-16T12:38:09+00:00","breadcrumb":{"@id":"https:\/\/ern-ithaca.eu\/about-us\/expert-centers\/ern-ithaca-odense-center\/#breadcrumb"},"inLanguage":"fr-FR","potentialAction":[{"@type":"ReadAction","target":["https:\/\/ern-ithaca.eu\/about-us\/expert-centers\/ern-ithaca-odense-center\/"]}]},{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/ern-ithaca.eu\/about-us\/expert-centers\/ern-ithaca-odense-center\/#primaryimage","url":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/04\/HCP-Odense_OUH-1900x1095.jpg","contentUrl":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/04\/HCP-Odense_OUH-1900x1095.jpg"},{"@type":"BreadcrumbList","@id":"https:\/\/ern-ithaca.eu\/about-us\/expert-centers\/ern-ithaca-odense-center\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/ern-ithaca.eu\/"},{"@type":"ListItem","position":2,"name":"About us > Our EU expert centers","item":"https:\/\/ern-ithaca.eu\/about-us\/expert-centers\/"},{"@type":"ListItem","position":3,"name":"ERN-ITHACA \u2013 Odense Center"}]},{"@type":"WebSite","@id":"https:\/\/ern-ithaca.eu\/#website","url":"https:\/\/ern-ithaca.eu\/","name":"ERN ITHACA","description":"WELCOME TO ERN-ITHACA WEBSITE!","publisher":{"@id":"https:\/\/ern-ithaca.eu\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/ern-ithaca.eu\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"fr-FR"},{"@type":"Organization","@id":"https:\/\/ern-ithaca.eu\/#organization","name":"ERN-ITHACA","url":"https:\/\/ern-ithaca.eu\/","logo":{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/ern-ithaca.eu\/#\/schema\/logo\/image\/","url":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Logo-ERN-ITHACA.jpg","contentUrl":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Logo-ERN-ITHACA.jpg","width":454,"height":172,"caption":"ERN-ITHACA"},"image":{"@id":"https:\/\/ern-ithaca.eu\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/x.com\/ERNIthaca","https:\/\/www.linkedin.com\/company\/ithaca-european-reference-network-on-congenital-malformations-ans-rare-intellectual-disability\/?viewAsMember=true"]}]}},"_links":{"self":[{"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/expert-centers\/373","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/expert-centers"}],"about":[{"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/types\/expert-centers"}],"wp:attachment":[{"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/media?parent=373"}],"wp:term":[{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/tags?post=373"},{"taxonomy":"country","embeddable":true,"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/country?post=373"},{"taxonomy":"center-status","embeddable":true,"href":"https:\/\/ern-ithaca.eu\/fr\/wp-json\/wp\/v2\/center-status?post=373"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}