{"id":21978,"date":"2021-12-13T11:27:17","date_gmt":"2021-12-13T10:27:17","guid":{"rendered":"https:\/\/ela-international.preprod.melisagency.fr\/?post_type=news&#038;p=21978"},"modified":"2024-08-21T08:21:12","modified_gmt":"2024-08-21T06:21:12","slug":"results-mld-study-journees-parisiennes-pediatrie","status":"publish","type":"news","link":"https:\/\/elainternational.eu\/en\/actualites\/results-mld-study-journees-parisiennes-pediatrie\/","title":{"rendered":"Presentation of the results of the MLD study at the Journ\u00e9es Parisiennes de P\u00e9diatrie"},"content":{"rendered":"\n\n<div class=\"block-wrapper\">\n    <div class=\"container-content\">\n        <p><span style=\"color: #df156e;\"><strong>Study on the impact of the disease on the quality of life and on the daily lives of families concerned by metachromatic leukodystrophy (MLD): Results presentation at the Parisian Pediatric Days on 10 and 11 December 2021.<\/strong><\/span><\/p>\n<p>This study was conducted on the platform <strong>Leuconnect<\/strong> created by ELA International, in partnership with ORCHARD Therapeutics, ARGO Sant\u00e9 (Health research &amp; consultancy company), and under the expertise of Dr. Caroline Sevin (Centre de R\u00e9f\u00e9rence Leucodystrophie, Service de Neurop\u00e9diatrie, H\u00f4pital de Bic\u00eatre, Paris) and of Dr. Magalie Barth (Service de g\u00e9n\u00e9tique, H\u00f4pital universitaire d&#8217;Angers, Angers).<\/p>\n<p>Opened in 2020, the study was closed in 2021 and led to a publication that highlights the difficulty in:<\/p>\n<ul>\n<li>Identification first signs<\/li>\n<li>How to face diagnosis<\/li>\n<li>Management of daily life with the disease and its constraints<\/li>\n<\/ul>\n<p>These results provide a <strong>better understanding of the family journey<\/strong> and open reflection on how to i<strong>mprove the daily lives of these patients<\/strong>. Early diagnosis is a major issue in this pathology and families are an invaluable source to better understand the pathology.<\/p>\n<p>The experts thank the families for their participation in this study.<\/p>\n\n            <\/div>\n<\/div>\n\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":6,"featured_media":22228,"parent":0,"template":"","news_categories":[97],"class_list":["post-21978","news","type-news","status-publish","has-post-thumbnail","hentry","news_categories-international-en"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Presentation of the results of the MLD study at the Journ\u00e9es Parisiennes de P\u00e9diatrie - ELA International<\/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:\/\/elainternational.eu\/en\/actualites\/results-mld-study-journees-parisiennes-pediatrie\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Presentation of the results of the MLD study at the Journ\u00e9es Parisiennes de P\u00e9diatrie - 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