{"id":6788,"date":"2022-03-22T11:40:00","date_gmt":"2022-03-22T10:40:00","guid":{"rendered":"https:\/\/miracum.cms.rrze.uni-erlangen.de\/?page_id=6788"},"modified":"2022-04-04T21:55:21","modified_gmt":"2022-04-04T19:55:21","slug":"cord_mi","status":"publish","type":"page","link":"https:\/\/www.miracum.org\/en\/das-konsortium\/projekte\/cord_mi\/","title":{"rendered":"CORD_MI"},"content":{"rendered":"<h3 style=\"text-align: justify\"><span style=\"font-family: helvetica, arial, sans-serif\">Collaboration on Rare Diseases<\/span><\/h3>\n<p style=\"text-align: justify\"><span style=\"font-family: helvetica, arial, sans-serif\">The Use Case \u201cCollaboration on Rare Diseases\u201d (CORD-MI) is a collaborative project comprising the four consortia of the Medical Informatics Initiative, in which numerous German university hospitals and partner institutions are involved. The aim is to improve care and research in the field of rare diseases. It builds on the Innovation Fund projects TRANSLATE-NAMSE and ZSE-DUO as well as the national DIMDI project \u201cCoding of Rare Diseases\u201d and uses the development status of the Medical Informatics Initiative across consortia.<\/span><\/p>\n<p style=\"text-align: justify\"><div class=\"rrze-elements accordion style_default\" id=\"accordion-0\">\n<div class=\"button-container-right\"><button class=\"expand-all standard-btn primary-btn xsmall-btn\" data-status=\"closed\">Expand All<\/button><\/div>\n<p><\/p>\n<div class=\"accordion-group fau\">\n<h2 class=\"accordion-heading\"><button class=\"accordion-toggle\" data-toggle=\"collapse\"  href=\"#collapse_0\" aria-expanded=\"false\" aria-controls=\"collapse_0\" id=\"collapse_button_0\"> Goals of CORD_MI <\/button><\/h2>\n<div id=\"collapse_0\" class=\"accordion-body\" aria-labelledby=\"collapse_button_0\">\n<div class=\"accordion-inner clearfix\">\n<p style=\"text-align: justify\"><span style=\"font-family: helvetica, arial, sans-serif\">It is estimated that around four million German citizens are affected by approximately 8,000 known rare diseases. Due to the rarity of each individual disease and the lack of consideration in hospital documentation, it is not yet possible to make concrete statements on the frequency, distribution and course of the disease, which has a negative impact on research, diagnosis and therapy. Based on the National Action Plan for People with Rare Diseases (NAMSE) from 2013, various measures have been implemented in Germany to support the coding of rare diseases (DIMDI-SE) and to create better care structures for patients in university hospitals (TRANSLATE-NAMSE, ZSE-Duo). In addition, there is a NAMSE strategy paper on digitisation needs for rare diseases. Despite these and other important care and research projects at national, European and international level, it has not yet been possible to establish sustainable structures for a digital network for data exchange for rare diseases.<\/span><\/p>\n<p style=\"text-align: justify\"><span style=\"font-family: helvetica, arial, sans-serif\">CORD-MI wants to contribute to changing this situation and uses the organizational and technical solutions of the Medical Informatics Initiative to<\/span><\/p>\n<p style=\"text-align: justify\"><span style=\"font-family: helvetica, arial, sans-serif\">1) improve the visibility of rare diseases<\/span><br \/>\n<span style=\"font-family: helvetica, arial, sans-serif\">2) provide insights into the reality of supply,<\/span><br \/>\n<span style=\"font-family: helvetica, arial, sans-serif\">3) improve the quality of patient care and<\/span><br \/>\n<span style=\"font-family: helvetica, arial, sans-serif\">4) stimulate research in the field of rare diseases.<\/span><\/p>\n<p style=\"text-align: justify\"><span style=\"font-family: helvetica, arial, sans-serif\">To this end, special concepts and solutions will be developed by 2022 to ensure that<\/span><\/p>\n<ul style=\"text-align: justify\">\n<li><span style=\"font-family: helvetica, arial, sans-serif\">\u00a0the documentation of rare diseases in university hospitals is improved<\/span><\/li>\n<li><span style=\"font-family: helvetica, arial, sans-serif\">the collected data can be shared and<\/span><\/li>\n<li><span style=\"font-family: helvetica, arial, sans-serif\">data protection is ensured in the nationwide data collection and data evaluation.<\/span><\/li>\n<\/ul>\n<p style=\"text-align: justify\"><\/div>\n<\/div>\n<\/div>\n<p><\/p>\n<div class=\"accordion-group fau\">\n<h2 class=\"accordion-heading\"><button class=\"accordion-toggle\" data-toggle=\"collapse\"  href=\"#collapse_1\" aria-expanded=\"false\" aria-controls=\"collapse_1\" id=\"collapse_button_1\"> MIRACUM project partner <\/button><\/h2>\n<div id=\"collapse_1\" class=\"accordion-body\" aria-labelledby=\"collapse_button_1\">\n<div class=\"accordion-inner clearfix\">\n<ul>\n<li><span style=\"font-family: helvetica, arial, sans-serif\">Technical University Dresden<\/span><\/li>\n<li><span style=\"font-family: helvetica, arial, sans-serif\">University Hospital Frankfurt am Main<\/span><\/li>\n<li><span style=\"font-family: helvetica, arial, sans-serif\">University Hospital Freiburg<\/span><\/li>\n<li><span style=\"font-family: helvetica, arial, sans-serif\">University Hospital Gie\u00dfen<\/span><\/li>\n<li><span style=\"font-family: helvetica, arial, sans-serif\">University Hospital Magdeburg<\/span><\/li>\n<li><span style=\"font-family: helvetica, arial, sans-serif\">University Hospital Mannheim<\/span><\/li>\n<li><span style=\"font-family: helvetica, arial, sans-serif\">University Hospital Marburg<\/span><\/li>\n<\/ul>\n<p style=\"text-align: justify\"><\/div>\n<\/div>\n<\/div>\n<p>\n<\/div>\n<\/p>\n<h5 style=\"text-align: justify\"><span style=\"font-family: helvetica, arial, sans-serif\">Further Information<\/span><\/h5>\n<p style=\"text-align: justify\"><a href=\"https:\/\/www.medizininformatik-initiative.de\/index.php\/de\/CORD\"><span style=\"font-size: 12pt\"><span style=\"font-family: helvetica, arial, sans-serif\">MII Website \u2013 CORD_MIs<\/span><\/span><\/a><\/p>\n<div class=\"shariff\"><ul class=\"shariff-buttons theme-default orientation-horizontal buttonsize-medium\"><li class=\"shariff-button mastodon shariff-nocustomcolor\" style=\"background-color:#563ACC\"><a href=\"https:\/\/s2f.kytta.dev\/?text=CORD_MI https%3A%2F%2Fwww.miracum.org%2Fen%2Fdas-konsortium%2Fprojekte%2Fcord_mi%2F\" title=\"Share on Mastodon\" aria-label=\"Share on Mastodon\" role=\"button\" rel=\"noopener nofollow\" class=\"shariff-link\" style=\"; 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background-color:#fff; color:#fff\" target=\"_blank\"><span class=\"shariff-icon\" style=\"\"><svg width=\"32px\" height=\"20px\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 11 32\"><path fill=\"#999\" d=\"M11.4 24v2.3q0 0.5-0.3 0.8t-0.8 0.4h-9.1q-0.5 0-0.8-0.4t-0.4-0.8v-2.3q0-0.5 0.4-0.8t0.8-0.4h1.1v-6.8h-1.1q-0.5 0-0.8-0.4t-0.4-0.8v-2.3q0-0.5 0.4-0.8t0.8-0.4h6.8q0.5 0 0.8 0.4t0.4 0.8v10.3h1.1q0.5 0 0.8 0.4t0.3 0.8zM9.2 3.4v3.4q0 0.5-0.4 0.8t-0.8 0.4h-4.6q-0.4 0-0.8-0.4t-0.4-0.8v-3.4q0-0.4 0.4-0.8t0.8-0.4h4.6q0.5 0 0.8 0.4t0.4 0.8z\"\/><\/svg><\/span><\/a><\/li><\/ul><\/div>","protected":false},"excerpt":{"rendered":"<p>Collaboration on Rare Diseases The Use Case \u201cCollaboration on Rare Diseases\u201d (CORD-MI) is a collaborative project comprising the four consortia of the Medical Informatics Initiative, in which numerous German university&hellip;<!--&hellip;--> <a class=\"more-link fa fa-angle-double-right\" href=\"https:\/\/www.miracum.org\/en\/das-konsortium\/projekte\/cord_mi\/\" title=\"Read more about &quot;CORD_MI&quot;\"><\/a><\/p>\n","protected":false},"author":3748,"featured_media":0,"parent":6771,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_rrze_cache":"enabled","_rrze_multilang_single_locale":"en_US","_rrze_multilang_single_source":"https:\/\/miracum.cms.rrze.uni-erlangen.de\/?page_id=6241","footnotes":""},"page_category":[],"page_tag":[],"workflow_usergroup":[],"class_list":["post-6788","page","type-page","status-publish","hentry","en-US"],"_links":{"self":[{"href":"https:\/\/www.miracum.org\/wp-json\/wp\/v2\/pages\/6788","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.miracum.org\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.miracum.org\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.miracum.org\/wp-json\/wp\/v2\/users\/3748"}],"replies":[{"embeddable":true,"href":"https:\/\/www.miracum.org\/wp-json\/wp\/v2\/comments?post=6788"}],"version-history":[{"count":2,"href":"https:\/\/www.miracum.org\/wp-json\/wp\/v2\/pages\/6788\/revisions"}],"predecessor-version":[{"id":7441,"href":"https:\/\/www.miracum.org\/wp-json\/wp\/v2\/pages\/6788\/revisions\/7441"}],"up":[{"embeddable":true,"href":"https:\/\/www.miracum.org\/wp-json\/wp\/v2\/pages\/6771"}],"wp:attachment":[{"href":"https:\/\/www.miracum.org\/wp-json\/wp\/v2\/media?parent=6788"}],"wp:term":[{"taxonomy":"page_category","embeddable":true,"href":"https:\/\/www.miracum.org\/wp-json\/wp\/v2\/page_category?post=6788"},{"taxonomy":"page_tag","embeddable":true,"href":"https:\/\/www.miracum.org\/wp-json\/wp\/v2\/page_tag?post=6788"},{"taxonomy":"workflow_usergroup","embeddable":true,"href":"https:\/\/www.miracum.org\/wp-json\/wp\/v2\/workflow_usergroup?post=6788"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}