{"id":1797,"date":"2017-07-19T18:01:48","date_gmt":"2017-07-19T16:01:48","guid":{"rendered":"http:\/\/www.mrsenat.be\/?p=1797"},"modified":"2017-07-19T18:01:48","modified_gmt":"2017-07-19T16:01:48","slug":"prevention-de-la-mucoviscidose-ou-en-est-on","status":"publish","type":"post","link":"https:\/\/www.mrsenat.be\/cahiers-du-senat\/prevention-de-la-mucoviscidose-ou-en-est-on\/","title":{"rendered":"Pr\u00e9vention de la mucoviscidose\u00a0: o\u00f9 en est-on\u00a0?"},"content":{"rendered":"<p>Anne Barzin se penche sur cette maladie g\u00e9n\u00e9tique par le biais d&rsquo;une question \u00e9crite \u00e0 la ministre Maggie De Block.<!--more--><br \/>\nA l&rsquo;instar de Val\u00e9rie De Bue fin 2016 (<a href=\"http:\/\/www.mrsenat.be\/2016\/12\/08\/depister-la-mucoviscidose\/\" target=\"_blank\"><strong>plus d&rsquo;infos par ici<\/strong><\/a>), la S\u00e9natrice MR Anne Barzin a r\u00e9cemment adress\u00e9 une question \u00e9crite sur le sujet de la mucoviscidose \u00e0 Maggie De Block, la ministre f\u00e9d\u00e9rale des Affaires sociales et de la Sant\u00e9 publique.<br \/>\nAnne Barzin y rappelle notamment que la mucoviscidose est une des maladies g\u00e9n\u00e9tiques les plus r\u00e9pandues en Belgique mais qu&rsquo;il n&rsquo;y a pourtant pas de d\u00e9pistage n\u00e9onatal syst\u00e9matique (m\u00eame si, en Communaut\u00e9 fran\u00e7aise celui-ci peut parfois \u00eatre propos\u00e9 \u00e0 certaines maternit\u00e9s par des laboratoires).<br \/>\nAutre constat: le diagnostic n&rsquo;\u00e9tant pas g\u00e9n\u00e9ralis\u00e9, les \u00e9tudes d\u00e9montrent que ce dernier est souvent pos\u00e9 plus tardivement.<br \/>\nLa mucoviscidose est cependant au centre de bien des pr\u00e9occupations. <em>\u00ab\u00a0En 2010, le Centre f\u00e9d\u00e9ral d&rsquo;expertise des soins de sant\u00e9 a \u00e9mis un avis favorable sur cette question<\/em>, stipule la question \u00e9crite de la S\u00e9natrice namuroise. <em>Cet avis est conditionn\u00e9 \u00e0 l&rsquo;autorisation des parents apr\u00e8s information, au contr\u00f4le de qualit\u00e9 des tests de d\u00e9pistage, \u00e0 l&rsquo;ex\u00e9cution s\u00e9lective des tests g\u00e9n\u00e9tiques et \u00e0 la garantie d&rsquo;un suivi de qualit\u00e9.\u00a0\u00bb<\/em><br \/>\nLe texte se poursuit en expliquant que <em>\u00ab\u00a0un d\u00e9pistage g\u00e9n\u00e9ralis\u00e9 en maternit\u00e9 permettrait \u00e0 certaines familles d&rsquo;obtenir des r\u00e9ponses plus rapides \u00e0 des sympt\u00f4mes qui restent sans r\u00e9ponse\u00a0\u00bb<\/em>.<br \/>\nL&rsquo;occasion pour Anne Barzin de souligner, par le biais de sa question, qu&rsquo;une concertation a \u00e9t\u00e9 organis\u00e9e dans le cadre de la Conf\u00e9rence interminist\u00e9rielle de la Sant\u00e9 publique avec les entit\u00e9s f\u00e9d\u00e9r\u00e9es, et qu&rsquo;un protocole d&rsquo;accord a \u00e9t\u00e9 sign\u00e9 en mati\u00e8re de pr\u00e9vention en 2016. A noter que le d\u00e9pistage n\u00e9onatal a \u00e9t\u00e9 inscrit dans la liste des sujets trait\u00e9s par ce protocole et celui de la mucoviscidose a \u00e9t\u00e9 repris dans les prioritaires.<br \/>\n<em>\u00ab\u00a0Suite \u00e0 cela, dans l&rsquo;optique de mettre en oeuvre ce protocole, des groupes de travail devaient se r\u00e9unir pour r\u00e9fl\u00e9chir \u00e0 la nature des tests et \u00e0 leurs impacts budg\u00e9taires<\/em>, termine la S\u00e9natrice namuroise. <em>L&rsquo;honorable ministre peut-elle nous communiquer l&rsquo;\u00e9tat d&rsquo;avancement de ces r\u00e9flexions\u00a0? Des propositions ont-elles d\u00e9j\u00e0 \u00e9t\u00e9 faites par ces groupes de travail\u00a0? Si oui, quelles sont-elles\u00a0? Quel est le calendrier pr\u00e9vu pour la conclusion de ces travaux?\u00a0\u00bb<\/em><br \/>\nLa r\u00e9ponse est attendue pour le 3 ao\u00fbt 2017.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Anne Barzin se penche sur cette maladie g\u00e9n\u00e9tique par le biais d&rsquo;une question \u00e9crite \u00e0 la ministre Maggie De Block.<\/p>\n","protected":false},"author":1,"featured_media":1436,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[80,92],"tags":[94,138,140,371],"class_list":["post-1797","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-valerie-de-bue","category-anne-barzin","tag-question-ecrite","tag-de-block","tag-sante","tag-mucoviscidose"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Pr\u00e9vention de la mucoviscidose\u00a0: o\u00f9 en est-on\u00a0? 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