{"id":20943,"date":"2022-05-25T10:32:03","date_gmt":"2022-05-25T10:32:03","guid":{"rendered":"https:\/\/fundacionnoelia.org\/?page_id=20943"},"modified":"2024-03-07T11:11:04","modified_gmt":"2024-03-07T11:11:04","slug":"registration","status":"publish","type":"page","link":"https:\/\/fundacionnoelia.org\/en\/the-disease\/registration\/","title":{"rendered":"Registration"},"content":{"rendered":"[vc_row][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″][vc_column_text]\n
THE NOELIA FOUNDATION COOPERATES WITH THE\u00a0ORGANIZATION CURE\u00a0CMD<\/a><\/strong>, WHICH IS THE ONLY ONE THAT TRIES TO COLLECT ALL THE PEOPLE AFFECTED WITH CMDS IN A UNIQUE REGISTRY<\/h5>\n[\/vc_column_text][vc_row_inner][vc_column_inner width=”1\/4″]
\"\"<\/a><\/div><\/figure>[\/vc_column_inner][vc_column_inner width=”3\/4″][vc_column_text]We strongly believe that it is important to have an unique registry in order to improve coordination and the use of resources.<\/p>\n

\u2022 The goal of this record is to list\u00a0all patients<\/strong>\u00a0affected by congenital muscular disorders in\u00a0a single international record.<\/strong><\/p>\n

\u2022 This is key to improve the\u00a0investigation<\/strong>\u00a0in this field and to enable\u00a0clinical trials<\/strong>\u00a0to produce cures and treatments.<\/p>\n

\u2022\u00a0Another of the challenges faced by our foundation<\/strong>\u00a0is to list, also in this record, all those affected by congenital muscular disorders with collagen VI deficiency.<\/p>\n

\u2022\u00a0We would like to encourage all those affected and their families to sign in to the record,<\/strong>\u00a0even if their diagnosis is not genetic.[\/vc_column_text][vc_empty_space]Register in the CMDIR Internation Registration<\/span><\/a> [\/vc_column_inner][\/vc_row_inner][\/vc_column][vc_column width=”1\/6″][\/vc_column][\/vc_row][vc_row][vc_column][vc_separator][vc_empty_space height=”15px”][\/vc_column][\/vc_row][vc_row][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″][vc_row_inner][vc_column_inner width=”1\/4″]

\"\"<\/a><\/div><\/figure>[\/vc_column_inner][vc_column_inner width=”3\/4″][vc_column_text]The Global Registry for COL6-related Dystrophies is an international patient registry collecting data from people and families that have a diagnosis of a COL6-related dystrophy.<\/p>\n

The registry is run at The John Walton Muscular Dystrophy Research Centre, Newcastle University, UK.<\/p>\n

It aims to improve clinical trial readiness, support research, and help our understanding of the COL6-related dystrophies by bringing together data from as many people as possible.[\/vc_column_text][vc_empty_space]You can find out more at collagen6.org<\/span><\/a> [\/vc_column_inner][\/vc_row_inner][\/vc_column][vc_column width=”1\/6″][\/vc_column][\/vc_row]\n","protected":false},"excerpt":{"rendered":"

[vc_row][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″][vc_column_text] THE NOELIA FOUNDATION COOPERATES WITH THE\u00a0ORGANIZATION CURE\u00a0CMD, WHICH IS THE ONLY ONE THAT TRIES TO COLLECT ALL THE PEOPLE AFFECTED WITH CMDS IN A UNIQUE REGISTRY [\/vc_column_text][vc_row_inner][vc_column_inner width=”1\/4″][\/vc_column_inner][vc_column_inner width=”3\/4″][vc_column_text]We strongly believe that it is important to have an unique registry in order to improve coordination and the use of resources. \u2022 The…<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":20910,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-20943","page","type-page","status-publish","hentry","entry","no-media"],"yoast_head":"\nRegistration - Fundaci\u00f3n Noelia<\/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:\/\/fundacionnoelia.org\/en\/the-disease\/registration\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Registration - Fundaci\u00f3n Noelia\" \/>\n<meta property=\"og:description\" content=\"[vc_row][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″][vc_column_text] THE NOELIA FOUNDATION COOPERATES WITH THE\u00a0ORGANIZATION CURE\u00a0CMD, WHICH IS THE ONLY ONE THAT TRIES TO COLLECT ALL THE PEOPLE AFFECTED WITH CMDS IN A UNIQUE REGISTRY [\/vc_column_text][vc_row_inner][vc_column_inner width=”1\/4″][\/vc_column_inner][vc_column_inner width=”3\/4″][vc_column_text]We strongly believe that it is important to have an unique registry in order to improve coordination and the use of resources. \u2022 The…\" \/>\n<meta property=\"og:url\" content=\"https:\/\/fundacionnoelia.org\/en\/the-disease\/registration\/\" \/>\n<meta property=\"og:site_name\" content=\"Fundaci\u00f3n Noelia\" \/>\n<meta property=\"article:modified_time\" content=\"2024-03-07T11:11:04+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data1\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/fundacionnoelia.org\/en\/the-disease\/registration\/\",\"url\":\"https:\/\/fundacionnoelia.org\/en\/the-disease\/registration\/\",\"name\":\"Registration - 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