{"id":1289,"date":"2017-07-28T18:48:14","date_gmt":"2017-07-28T16:48:14","guid":{"rendered":"https:\/\/www.neuromuscularbcn.org\/new-registry-of-collagen-vi-deficit-myopathy\/"},"modified":"2017-07-28T18:48:14","modified_gmt":"2017-07-28T16:48:14","slug":"new-registry-of-collagen-vi-deficit-myopathy","status":"publish","type":"post","link":"https:\/\/www.neuromuscularbcn.org\/en\/new-registry-of-collagen-vi-deficit-myopathy\/","title":{"rendered":"New registry of collagen VI deficit myopathy"},"content":{"rendered":"<p>We announced the launch of the Collagen VI Deficiency Myopathy Registry (COL-VI Registry), created with the aim of registering the largest number of patients with this disease to be able to carry out a 5-year natural history study, in paediatric and adult patients and to assist in the localization of patients for clinical trials.<\/p>\n<p><span style=\"font-size: 1em\">The design of this registry has been agreed by national experts, both clinical and basic in this pathology, led by Dr. Cecilia Jim\u00e9nez and Dr. Andr\u00e9s Nascimento of the Hospital de Sant Joan de D\u00e9u. This register is part of the project NMD-ES (Spanish Registry of Neuromuscular Diseases) of CIBERER, which is coordinated from the Unit of Neuromuscular Diseases of the Hospital of Sant Pau by Dr. Isabel Illa. Currently neurologists from 28 hospitals are participating in the NMD-ES project.<\/span><\/p>\n<p>We invite you all to participate in this new project and we encourage you to introduce the data of your patients.<\/p>\n<h4 class=\"anclaje_btn_cab\">COMO PARTICIPAR EN EL REGISTRO<\/h4>\n<div id=\"cnt_btn_desp\">\n<div id=\"pacient_despl\" class=\"btn_despl\">Si eres paciente y quieres participar<\/div>\n<div id=\"medico_despl\" class=\"btn_despl\">Si eres m\u00e9dico y quieres participar<\/div>\n<\/div>\n<div id=\"pacient_text\" class=\"txt_despl\">Los datos de este registro son introducidos por el m\u00e9dico neur\u00f3logo del paciente. Si como paciente afectado quieres que tus datos consten en este registro puedes pedir a tu m\u00e9dico que se ponga en contacto con nosotros a la direcci\u00f3n de correo electr\u00f3nico <a href=\"mailto:ssegovia@santpau.cat\" target=\"_blank\" rel=\"noopener noreferrer\">ssegovia@santpau.cat<\/a>\u00a0o envi\u00e1ndonos el siguiente formulario, nosotros le informaremos de los pasos a seguir para poder participar.<br \/>\n[form_contacto mail_destino=&#8221;ssegovia@santpau.cat&#8221; title=&#8221;Contacto Registro Miopat\u00eda por d\u00e9ficit de col\u00e1geno VI (Pacientes)&#8221; id_frm=&#8221;frm_cto_paciente&#8221;]<\/div>\n<div id=\"medico_text\" class=\"txt_despl\">Si todav\u00eda no participas en el Registro Miopat\u00eda por d\u00e9ficit de col\u00e1geno VI, ponte en contacto con nosotros a la direcci\u00f3n de correo <a href=\"mailto:ssegovia@santpau.cat\" target=\"_blank\" rel=\"noopener noreferrer\">ssegovia@santpau.cat<\/a> o envi\u00e1ndonos el siguiente formulario y te informaremos de todo el procedimiento para formar parte de este proyecto.<br \/>\n[form_contacto mail_destino=&#8221;ssegovia@santpau.cat&#8221; title=&#8221;Contacto Registro Miopat\u00eda por d\u00e9ficit de col\u00e1geno VI (M\u00e9dicos)&#8221; id_frm=&#8221;frm_cto_medicos&#8221;]<\/div>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>We announced the launch of the Collagen VI Deficiency Myopathy  [&#8230;]<\/p>\n","protected":false},"author":1,"featured_media":1290,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[25,96],"tags":[128,129,27,99],"class_list":["post-1289","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","category-records","tag-collagen-vi","tag-myopathy","tag-neuromuscular","tag-registry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - 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