{"id":424,"date":"2018-05-28T10:43:26","date_gmt":"2018-05-28T08:43:26","guid":{"rendered":"https:\/\/wasipope.cyon.site\/2018\/05\/28\/schweizer-register-fur-seltene-krankheiten-srsk\/"},"modified":"2024-03-26T11:33:25","modified_gmt":"2024-03-26T10:33:25","slug":"schweizer-register-fur-seltene-krankheiten-srsk","status":"publish","type":"post","link":"https:\/\/ig-seltene-krankheiten.ch\/fr\/2018\/05\/28\/schweizer-register-fur-seltene-krankheiten-srsk\/","title":{"rendered":"Registre suisse des maladies rares (RSMR)"},"content":{"rendered":"<div id='layer_slider_1'  class='avia-layerslider main_color avia-shadow  avia-builder-el-0  el_before_av_submenu  avia-builder-el-first  container_wrap fullsize'  style='height: 236px; max-width: 1280px; margin: 0 auto;'  ><\/div>\n<div class='clear'><\/div><div id='sub_menu1'  class='av-submenu-container av-7iqp-c303ac7d9c65ba19eb2a8c0bf317f918 header_color av-switch-768  avia-builder-el-1  el_after_av_layerslider  el_before_av_two_third  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class=\"avia-menu-text\">Actualit\u00e9s<\/span><span class=\"avia-menu-fx\"><span class=\"avia-arrow-wrap\"><span class=\"avia-arrow\"><\/span><\/span><\/span><\/a><\/li>\n<\/ul><\/div><\/div><div class='sticky_placeholder'><\/div><div id='after_submenu_1'  class='main_color av_default_container_wrap container_wrap fullsize'  ><div class='container av-section-cont-open' ><div class='template-page content  av-content-full alpha units'><div class='post-entry post-entry-type-page post-entry-424'><div class='entry-content-wrapper clearfix'>\n<div  class='flex_column av-6dzr-2da157fbbdf68d71b63f961e0b687a91 av_two_third  avia-builder-el-2  el_after_av_submenu  el_before_av_one_third  avia-builder-el-first  first flex_column_div  '     ><section  class='av_textblock_section av-lu2dwwa0-7d8be0a7a3511a01c6682a09b7578452 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><h1>Registre suisse des maladies rares (RSMR)<\/h1>\n<\/div><\/section><br \/>\n<section  class='av_textblock_section av-lu2dycm8-7e2db860dd6144e7decdf7bd53da0898 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><p class=\"intro\">La mesure n\u00b0 17 du concept national maladies rares pr\u00e9voit l\u2019\u00e9tablissement de registres. Fin 2016, l\u2019Office f\u00e9d\u00e9ral de la sant\u00e9 publique (OFSP) a charg\u00e9 l\u2019ISPM de planifier en d\u00e9tail le projet de RSMR afin de disposer d\u2019une base fiable permettant de mettre au point un registre exploitable et efficient. Apr\u00e8s avoir \u00e9t\u00e9 adapt\u00e9 sur la base des avis r\u00e9colt\u00e9s lors d\u2019une consultation des parties prenantes, le projet est maintenant disponible. Fin d\u00e9cembre 2017, une demande d\u2019exploitation du registre a \u00e9t\u00e9 d\u00e9pos\u00e9e aupr\u00e8s de la commission d\u2019\u00e9thique de la recherche du canton de Berne. Lorsque les adaptations requises auront \u00e9t\u00e9 effectu\u00e9es et que la demande aura \u00e9t\u00e9 approuv\u00e9e, l\u2019\u00e9tape suivante consistera \u00e0 programmer la base de donn\u00e9es et \u00e0 organiser le registre. La date pr\u00e9cise \u00e0 laquelle les premi\u00e8res donn\u00e9es pourront \u00eatre saisies est encore inconnue.<\/p>\n<div class=\"links\">\n<p><a href=\"https:\/\/www.spectra-online.ch\/fr\/spectra\/dossiers\/Schweizer%20Register%20f%C3%BCr%20seltene%20Krankheiten%20(SRSK)-695-10.html\" target=\"_blank\" rel=\"noopener\">&gt; L&rsquo;article dans Spectra<\/a><\/p>\n<\/div><\/section><\/p><\/div><div  class='flex_column av-ar9-1a4d5bb6d47a5ed4abf22860e7d05501 av_one_third  avia-builder-el-5  el_after_av_two_third  avia-builder-el-last  flex_column_div  '     ><\/div><\/p>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>La mesure n\u00b0 17 du concept national maladies rares pr\u00e9voit l\u2019\u00e9tablissement de registres. Fin 2016, l\u2019Office f\u00e9d\u00e9ral de la sant\u00e9 publique (OFSP) a charg\u00e9 l\u2019ISPM de planifier en d\u00e9tail le projet de RSMR afin de disposer d\u2019une base fiable permettant de mettre au point un registre exploitable et efficient.<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4],"tags":[],"class_list":["post-424","post","type-post","status-publish","format-standard","hentry","category-non-classifiee"],"_links":{"self":[{"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/posts\/424","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/comments?post=424"}],"version-history":[{"count":2,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/posts\/424\/revisions"}],"predecessor-version":[{"id":426,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/posts\/424\/revisions\/426"}],"wp:attachment":[{"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/media?parent=424"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/categories?post=424"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/ig-seltene-krankheiten.ch\/fr\/wp-json\/wp\/v2\/tags?post=424"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}