{"id":471,"date":"2023-02-20T16:39:52","date_gmt":"2023-02-20T15:39:52","guid":{"rendered":"https:\/\/www.chu-tours.fr\/pemr-cvl\/?page_id=471"},"modified":"2026-08-24T08:59:14","modified_gmt":"2026-08-24T06:59:14","slug":"sclerose-laterale-amyotrophique-et-autres-maladies-rares-du-neurone-moteur","status":"publish","type":"page","link":"https:\/\/www.chu-tours.fr\/pemr-cvl\/sclerose-laterale-amyotrophique-et-autres-maladies-rares-du-neurone-moteur\/","title":{"rendered":"Scl\u00e9rose Lat\u00e9rale Amyotrophique et autres Maladies Rares du Neurone Moteur"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"471\" class=\"elementor elementor-471\" data-elementor-post-type=\"page\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-ab32dc0 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"ab32dc0\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-68e0dc0e\" data-id=\"68e0dc0e\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-68e93f27 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"68e93f27\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-33 elementor-inner-column elementor-element elementor-element-6f89607a\" data-id=\"6f89607a\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-33 elementor-inner-column elementor-element elementor-element-4def3c2a\" data-id=\"4def3c2a\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-73e39d94 elementor-widget elementor-widget-image\" data-id=\"73e39d94\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 15-07-2024 *\/\n.elementor-widget-image{text-align:center}.elementor-widget-image a{display:inline-block}.elementor-widget-image a img[src$=\".svg\"]{width:48px}.elementor-widget-image img{vertical-align:middle;display:inline-block}<\/style>\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/www.arsla.org\" target=\"_blank\">\n\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"300\" height=\"194\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/logo-arsla-35ans.jpg\" class=\"attachment-medium size-medium wp-image-475\" alt=\"\" \/>\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-33 elementor-inner-column elementor-element elementor-element-ee88e05\" data-id=\"ee88e05\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-3bcdd322 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"3bcdd322\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-inner-column elementor-element elementor-element-63eb1d21\" data-id=\"63eb1d21\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-1d01a94c elementor-widget elementor-widget-text-editor\" data-id=\"1d01a94c\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 15-07-2024 *\/\n.elementor-widget-text-editor.elementor-drop-cap-view-stacked .elementor-drop-cap{background-color:#69727d;color:#fff}.elementor-widget-text-editor.elementor-drop-cap-view-framed .elementor-drop-cap{color:#69727d;border:3px solid;background-color:transparent}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap{margin-top:8px}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap-letter{width:1em;height:1em}.elementor-widget-text-editor .elementor-drop-cap{float:left;text-align:center;line-height:1;font-size:50px}.elementor-widget-text-editor .elementor-drop-cap-letter{display:inline-block}<\/style>\t\t\t\t<p><span style=\"font-size: 14pt;color: #ed1164\">Face \u00e0 l\u2019\u00e9pid\u00e9mie de coronavirus qui touche la France, les \u00e9quipes de l\u2019ARSLA restent op\u00e9rationnelles pour prot\u00e9ger les malades, les aidants et les informer !<\/span><\/p><p>L\u2019\u00e9pid\u00e9mie de COVID-19 actuellement en cours en France impose aux personnes fragiles d\u2019\u00eatre particuli\u00e8rement vigilantes et de prendre de fortes pr\u00e9cautions pour \u00e9viter tout risque de contamination. L&#8217;ARSLA reste mobilis\u00e9e pour vous accompagner et vous guider au mieux.<\/p><p>Un <strong>dispositif sp\u00e9cifique<\/strong> a \u00e9t\u00e9 mis en place :<\/p><ul><li>Une permanence t\u00e9l\u00e9phonique ouverte 7\/7 de 9h30 \u00e0 18h30 au 01 58 30 58 57<\/li><li>Des groupes de parole en ligne pour les aidants (s\u00e9curis\u00e9). Le prochain groupe est pr\u00e9vu jeudi 9 avril \u00e0 14h. Inscription obligatoire : <a href=\"mailto:contact@arsla.org\">contact@arsla.org<\/a><\/li><li>Des <strong>ateliers de cuisine MIXITON<\/strong> en ligne \u00e0 l&#8217;approche de P\u00e2ques afin de\u00a0 partager en famille un m\u00eame et seul repas &#8211; Rendez-vous le vendredi 10 avril \u00e0 14h 30 &#8211; Inscription obligatoire :\u00a0<a href=\"mailto:contact@arsla.org\">contact@arsla.org<\/a><\/li><li>Des <strong>facebooklive<\/strong> tous les vendredis \u00e0 14h pour r\u00e9pondre en direct aux questions de nos internautes : rendez-vous sur l&#8217;une de nos pages facebbok\u00a0 #ARSLA ou #Ensemble parlons de la SLA<\/li><li>Mise en ligne d&#8217;une <strong>FAQ sp\u00e9ciale COVID <\/strong>mise \u00e0 jour r\u00e9guli\u00e8rement : soins, aides \u00e0 domicile, rendez-vous m\u00e9dicaux, on fait le point sur l\u2019ensemble des recommandations \u00e0 suivre si vous \u00eates une personne concern\u00e9e par la SLA ou un proche.<\/li><li>Pr\u00eat d&#8217;aides techniques, conseil en ergoth\u00e9rapie : vous pouvez joindre nos ergoth\u00e9rapeutes du lundi au vendredi de 10h \u00e0 17h au 01 58 30 58 52\/53.<\/li><\/ul>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-6df7c726 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"6df7c726\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-7d155ee5\" data-id=\"7d155ee5\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-2226ef1c elementor-widget elementor-widget-heading\" data-id=\"2226ef1c\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 15-07-2024 *\/\n.elementor-heading-title{padding:0;margin:0;line-height:1}.elementor-widget-heading .elementor-heading-title[class*=elementor-size-]>a{color:inherit;font-size:inherit;line-height:inherit}.elementor-widget-heading .elementor-heading-title.elementor-size-small{font-size:15px}.elementor-widget-heading .elementor-heading-title.elementor-size-medium{font-size:19px}.elementor-widget-heading .elementor-heading-title.elementor-size-large{font-size:29px}.elementor-widget-heading .elementor-heading-title.elementor-size-xl{font-size:39px}.elementor-widget-heading .elementor-heading-title.elementor-size-xxl{font-size:59px}<\/style><h2 class=\"elementor-heading-title elementor-size-default\">Centre de R\u00e9f\u00e9rence Coordonnateur National sur la Scl\u00e9rose Lat\u00e9rale Amyotrophique et autres Maladies Rares du Neurone Moteur<\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-64617381 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"64617381\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-33 elementor-inner-column elementor-element elementor-element-6bb1d9f5\" data-id=\"6bb1d9f5\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-4e2a8fda elementor-widget elementor-widget-image\" data-id=\"4e2a8fda\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"131\" height=\"101\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/logo-crmr.png\" class=\"attachment-medium size-medium wp-image-361\" alt=\"\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-33 elementor-inner-column elementor-element elementor-element-12f1d070\" data-id=\"12f1d070\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-33 elementor-inner-column elementor-element elementor-element-61d35904\" data-id=\"61d35904\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-21865003 elementor-widget elementor-widget-image\" data-id=\"21865003\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"160\" height=\"106\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/logo-filslan.png\" class=\"attachment-medium size-medium wp-image-476\" alt=\"\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-3aba0554 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"3aba0554\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-2e4f55f7\" data-id=\"2e4f55f7\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-58df3097 elementor-widget elementor-widget-text-editor\" data-id=\"58df3097\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<p><strong>Le Centre de r\u00e9f\u00e9rence coordonnateur national est compos\u00e9 d\u2019une \u00e9quipe multidisciplinaire sp\u00e9cialis\u00e9e dans la prise en charge de la Scl\u00e9rose Lat\u00e9rale Amyotrophique et des autres Maladies Rares du Neurone Moteur. <\/strong>.<\/p><p>Ses missions :<\/p><ul><li>Assurer le diagnostic et la coordination des soins, ainsi que l\u2019accompagnement lors de la phase terminale de la maladie<\/li><li>Coordonner et participer \u00e0 des projets de\u00a0 recherche (fondamentales, cliniques, \u00e9pid\u00e9miologiques)<\/li><li>Promouvoir l\u2019enseignement et la formation<\/li><\/ul><p>Le centre est membre:<\/p><ul><li>De la Fili\u00e8re de Sant\u00e9 Maladies Rares FILSLAN<\/li><li>Du groupe europ\u00e9en ENCALS et TRICALS<\/li><\/ul>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-1fc1e39e elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"1fc1e39e\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-1d5897e7\" data-id=\"1d5897e7\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-44e9669d elementor-widget elementor-widget-image\" data-id=\"44e9669d\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"40\" height=\"40\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/uk-flag-square-icon-128-40x40-1-40x40.png\" class=\"attachment-pictogramme-home size-pictogramme-home wp-image-372\" alt=\"\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-53eb4d6a\" data-id=\"53eb4d6a\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-460165c elementor-widget elementor-widget-toggle\" data-id=\"460165c\" data-element_type=\"widget\" data-widget_type=\"toggle.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 15-07-2024 *\/\n.elementor-toggle{text-align:start}.elementor-toggle .elementor-tab-title{font-weight:700;line-height:1;margin:0;padding:15px;border-bottom:1px solid #d5d8dc;cursor:pointer;outline:none}.elementor-toggle .elementor-tab-title .elementor-toggle-icon{display:inline-block;width:1em}.elementor-toggle .elementor-tab-title .elementor-toggle-icon svg{margin-inline-start:-5px;width:1em;height:1em}.elementor-toggle .elementor-tab-title .elementor-toggle-icon.elementor-toggle-icon-right{float:right;text-align:right}.elementor-toggle .elementor-tab-title .elementor-toggle-icon.elementor-toggle-icon-left{float:left;text-align:left}.elementor-toggle .elementor-tab-title .elementor-toggle-icon .elementor-toggle-icon-closed{display:block}.elementor-toggle .elementor-tab-title .elementor-toggle-icon .elementor-toggle-icon-opened{display:none}.elementor-toggle .elementor-tab-title.elementor-active{border-bottom:none}.elementor-toggle .elementor-tab-title.elementor-active .elementor-toggle-icon-closed{display:none}.elementor-toggle .elementor-tab-title.elementor-active .elementor-toggle-icon-opened{display:block}.elementor-toggle .elementor-tab-content{padding:15px;border-bottom:1px solid #d5d8dc;display:none}@media (max-width:767px){.elementor-toggle .elementor-tab-title{padding:12px}.elementor-toggle .elementor-tab-content{padding:12px 10px}}.e-con-inner>.elementor-widget-toggle,.e-con>.elementor-widget-toggle{width:var(--container-widget-width);--flex-grow:var(--container-widget-flex-grow)}<\/style>\t\t<div class=\"elementor-toggle\">\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-7341\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-7341\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\"><em>The reference centre is composed of a multidisciplinary team specialised in ...<\/em><\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-7341\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-7341\"><p><em>The reference centre is composed of a multidisciplinary team specialised in the care of Amytrophic Lateral Sclerosis and Rare Motor-Neuron Diseases.\u00a0 <\/em><\/p><p><em>The duties of the centre are :<\/em><\/p><ul><li><em>Ensure the diagnostic and the coordination of care including providing care and support for the terminally ill<\/em><\/li><li><em>Organise and participate in research projects (fundamental, clinical, epidemiological)<\/em><\/li><li><em>Promote education and training<\/em><\/li><\/ul><p><em>The centre is a member :<\/em><\/p><ul><li><em>Of the French National Rare Disease Network FILSLAN<\/em><\/li><li><em>The European Network for the Cure of ALS (ENCALS)<\/em><\/li><li><em>The European Research Initiative to find a cure for ALS (TRICALS)<\/em><\/li><\/ul><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-2fb206fc elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"2fb206fc\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-2fe6940d\" data-id=\"2fe6940d\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-7fc2e34e elementor-widget elementor-widget-image\" data-id=\"7fc2e34e\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t<figure class=\"wp-caption\">\n\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"155\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/sla-pathologies-300x155-1.png\" class=\"attachment-medium size-medium wp-image-477\" alt=\"\" \/>\t\t\t\t\t\t\t\t\t\t\t<figcaption class=\"widget-image-caption wp-caption-text\">PATHOLOGIES CONCERN\u00c9ES<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-5971e77c elementor-widget elementor-widget-toggle\" data-id=\"5971e77c\" data-element_type=\"widget\" data-widget_type=\"toggle.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-toggle\">\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1501\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-1501\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\"><span style=\"text-transform: uppercase\"><strong>Pathologies concern\u00e9es<\/strong><\/span><\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-1501\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-1501\"><h4>QU&#8217;EST-CE QUE LA SCL\u00c9ROSE LAT\u00c9RALE AMYOTROPHIQUE ?<\/h4><ul><li>La scl\u00e9rose lat\u00e9rale amyotrophique (<strong>SLA<\/strong>) ou<strong> maladie de Charcot<\/strong> est une maladie li\u00e9e \u00e0 l\u2019atteinte des motoneurones dans le cerveau et la moelle \u00e9pini\u00e8re. Les motoneurones commandent le fonctionnement de l\u2019ensemble des muscles squelettiques.<\/li><\/ul><h4>COMBIEN DE PERSONNES SONT ATTEINTES DE CETTE MALADIE ?<\/h4><ul><li>La scl\u00e9rose lat\u00e9rale amyotrophique (SLA) touche actuellement environ 6 000 \u00e0 7 000 personnes en France. Chaque ann\u00e9e, pr\u00e8s de 2 000 nouveaux cas sont diagnostiqu\u00e9s, soit environ 6 nouveaux cas par jour.<br \/>L\u2019incidence de la maladie est estim\u00e9e \u00e0 environ 3 cas pour 100 000 habitants par an (Sant\u00e9 publique France)<\/li><\/ul><h4>\u00c0 QUOI EST-ELLE DUE ?<\/h4><ul><li>L&#8217;origine de la <strong>SLA<\/strong> est complexe \u00e0 d\u00e9terminer : la survenue de la maladie serait multifactorielle, soumise \u00e0 l&#8217;influence de la g\u00e9n\u00e9tique et de l&#8217;environnement.<\/li><\/ul><h4>QUELLES SONT LES AUTRES MALADIES RARES DU NEURONE MOTEUR?<\/h4><ul><li>La <strong>Maladie du Kennedy<\/strong> ou amyotrophie bulbo-spinale li\u00e9e \u00e0 l\u2019X est une maladie g\u00e9n\u00e9tique caract\u00e9ris\u00e9e par une atrophie musculaire proximale et bulbaire. La pr\u00e9valence de la maladie est de 1\/30.000 naissances masculines avec une incidence annuelle de 1\/526.000. La maladie de Kennedy se d\u00e9clare entre l\u2019\u00e2ge de 30 et 60 ans par un tremblement, des crampes musculaires, des fasciculations, une fatigabilit\u00e9 musculaire et une dysarthrie. Avec la progression de la maladie, d&#8217;autres signes touchant les muscles des membres avec faiblesse et amyotrophie proximale et les muscles bulbaires avec dysarthrie, dysphonie, m\u00e2choire tombante, atrophie de la langue, difficult\u00e9s de mastication et de d\u00e9glutition apparaissent.<\/li><li>La <strong>scl\u00e9rose lat\u00e9rale primitive<\/strong> est li\u00e9e \u00e0 la d\u00e9g\u00e9n\u00e9rescence\u00a0 des motoneurones du cerveau. Elle est plus rare que la <strong>SLA<\/strong> et son \u00e9volution est plus longue.<\/li><li>Plus d\u2019informations sur les maladies rares : <a href=\"https:\/\/www.orpha.net\/consor\/cgi-bin\/index.php?lng=FR\" target=\"_blank\" rel=\"noopener\">https:\/\/www.orpha.net\/consor\/cgi-bin\/index.php?lng=FR<\/a><\/li><\/ul><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-612a24e6 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"612a24e6\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-57bc1537\" data-id=\"57bc1537\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-6c120ba4 elementor-widget elementor-widget-image\" data-id=\"6c120ba4\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t<figure class=\"wp-caption\">\n\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"300\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/equipe-300x300-1-300x300.png\" class=\"attachment-medium size-medium wp-image-366\" alt=\"\" srcset=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/equipe-300x300-1.png 300w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/equipe-300x300-1-150x150.png 150w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/equipe-300x300-1-40x40.png 40w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/>\t\t\t\t\t\t\t\t\t\t\t<figcaption class=\"widget-image-caption wp-caption-text\">L'\u00c9QUIPE<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-575138d6 elementor-widget elementor-widget-toggle\" data-id=\"575138d6\" data-element_type=\"widget\" data-widget_type=\"toggle.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-toggle\">\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1461\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-1461\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\"><span style=\"text-transform: uppercase\"><strong>L'\u00e9quipe<\/strong><\/span><\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-1461\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-1461\"><p><strong>\u00c9quipe m\u00e9dicale\u00a0<\/strong><\/p><ul><li>Pr Philippe CORCIA &#8211; Neurologue &#8211; <strong>M\u00e9decin Coordonnateur du Centre <\/strong><\/li><li>Dr St\u00e9phane BELTRAN &#8211; Neurologue<\/li><li>Dr Anne-Sophie PIEGAY &#8211; Neurologue<\/li><li>Pr Laurent PLANTIER &#8211; Pneumologue<\/li><li>Dr Sylvie LEGUE &#8211; Pneumologue<\/li><\/ul><p><strong>\u00c9quipe param\u00e9dicale<\/strong><\/p><ul><li>Mme Anne FERNANDEZ &#8211; Psychologue<\/li><li>Mme Audrey VESTRIS &#8211; Cadre de Sant\u00e9<\/li><li>Mme Sophie CHERPEAU &#8211; Infirmi\u00e8re<\/li><li>Mme L\u00e9a DESNEUX &#8211; Ergoth\u00e9rapeute<\/li><li>Mme Oc\u00e9ane GUERRY &#8211; Assistante Sociale<\/li><li>Mme Pauline CHEVE &#8211; Di\u00e9t\u00e9ticienne<\/li><li>M. Mohammed MOUZOURI &#8211; Attach\u00e9 de Recherche Clinique<\/li><li>Mme Sally AL HAJJ &#8211; Attach\u00e9e de Recherche Clinique<\/li><li>Mme No\u00e9mie EYRAUD &#8211; Cheffe de projet<\/li><li>Mme Sabina DESCHATRETTES &#8211; Secr\u00e9taire<\/li><\/ul><p><strong>Laboratoire de Biochimie et Biologie Mol\u00e9culaire\u00a0<\/strong><\/p><ul><li>Pr Patrick VOURC\u2019H (R\u00e9f\u00e9rent National)<\/li><li>Pr H\u00e9l\u00e8ne BLASCO<\/li><li>Dr Charlotte VEYRAT-DUREBEX<\/li><\/ul><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-4b02614e elementor-widget elementor-widget-accordion\" data-id=\"4b02614e\" data-element_type=\"widget\" data-widget_type=\"accordion.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 15-07-2024 *\/\n.elementor-accordion{text-align:start}.elementor-accordion .elementor-accordion-item{border:1px solid #d5d8dc}.elementor-accordion .elementor-accordion-item+.elementor-accordion-item{border-top:none}.elementor-accordion .elementor-tab-title{margin:0;padding:15px 20px;font-weight:700;line-height:1;cursor:pointer;outline:none}.elementor-accordion .elementor-tab-title .elementor-accordion-icon{display:inline-block;width:1.5em}.elementor-accordion .elementor-tab-title .elementor-accordion-icon svg{width:1em;height:1em}.elementor-accordion .elementor-tab-title .elementor-accordion-icon.elementor-accordion-icon-right{float:right;text-align:right}.elementor-accordion .elementor-tab-title .elementor-accordion-icon.elementor-accordion-icon-left{float:left;text-align:left}.elementor-accordion .elementor-tab-title .elementor-accordion-icon .elementor-accordion-icon-closed{display:block}.elementor-accordion .elementor-tab-title .elementor-accordion-icon .elementor-accordion-icon-opened,.elementor-accordion .elementor-tab-title.elementor-active .elementor-accordion-icon-closed{display:none}.elementor-accordion .elementor-tab-title.elementor-active .elementor-accordion-icon-opened{display:block}.elementor-accordion .elementor-tab-content{display:none;padding:15px 20px;border-top:1px solid #d5d8dc}@media (max-width:767px){.elementor-accordion .elementor-tab-title{padding:12px 15px}.elementor-accordion .elementor-tab-title .elementor-accordion-icon{width:1.2em}.elementor-accordion .elementor-tab-content{padding:7px 15px}}.e-con-inner>.elementor-widget-accordion,.e-con>.elementor-widget-accordion{width:var(--container-widget-width);--flex-grow:var(--container-widget-flex-grow)}<\/style>\t\t<div class=\"elementor-accordion\">\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1251\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-1251\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><i class=\"fas fa-plus\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><i class=\"fas fa-minus\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" tabindex=\"0\">Pour prendre rendez vous :<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-1251\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-1251\"><ul><li><p><strong>H\u00f4pital Bretonneau &#8211; B\u00e2timent B3<\/strong><\/p><p>T\u00e9l : <span style=\"color: #ed1164\"><strong>02 47 47 37 24\u00a0<\/strong><\/span><\/p><\/li><\/ul><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-11e45ef5 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"11e45ef5\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-2ba83cc\" data-id=\"2ba83cc\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-29db1117 elementor-widget elementor-widget-image\" data-id=\"29db1117\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t<figure class=\"wp-caption\">\n\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"240\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/recherche-300x240-1.png\" class=\"attachment-medium size-medium wp-image-369\" alt=\"\" \/>\t\t\t\t\t\t\t\t\t\t\t<figcaption class=\"widget-image-caption wp-caption-text\">RECHERCHE<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-61237471 elementor-widget elementor-widget-toggle\" data-id=\"61237471\" data-element_type=\"widget\" data-widget_type=\"toggle.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-toggle\">\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1621\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-1621\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\"><span style=\"text-transform: uppercase\"><strong>Recherche<\/strong><\/span><\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-1621\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-1621\"><p>L\u2019\u00e9quipe de Tours d\u00e9veloppe depuis plus de 20 ans maintenant une activit\u00e9 de Recherche importante dans deux th\u00e9matiques essentiellement : l\u2019identification de facteurs g\u00e9n\u00e9tiques de susceptibilit\u00e9 et de biomarqueurs diagnostiques et pronostiques permettant un diagnostic plus pr\u00e9coce et une capacit\u00e9 de pr\u00e9dire l\u2019\u00e9volution de la SLA du patient analys\u00e9, puisqu\u2019il n\u2019y a pas de profil \u00e9volutif classique pour cette maladie. Cette recherche est possible gr\u00e2ce \u00e0 l\u2019appui de l\u2019unit\u00e9 Inserm U1253 \u00abImaging Brain and Neuropsychiatry \u00bb et plus sp\u00e9cifiquement sur l\u2018\u00e9quipe 3 \u00ab <strong>Vuln\u00e9rabilit\u00e9 Neuronale<\/strong>\u00bb.<\/p><p>Le centre de Tours est l\u2019un des centres du groupe europ\u00e9en ENCALS (European Network to cure ALS) qui coordonne plusieurs projets internationaux notamment sur les facteurs g\u00e9n\u00e9tiques et l\u2019identification de biomarqueurs et membre de la gouvernance du groupe TRICALS (<strong>Treatment Research Initiative to Cure ALS<\/strong>) <strong>dont l\u2019objectif est de gu\u00e9rir les patients atteints de la SLA<\/strong>.<\/p><p>Tours coordonne avec le centre de Limoges au sein de FILSLAN le projet international de g\u00e9n\u00e9tique \u00ab Mine \u00bb ; ce projet initi\u00e9 par l\u2019\u00e9quipe du Pr van den Berg d\u2019Utrecht ambitionne d\u2019identifier les facteurs g\u00e9n\u00e9tiques de la SLA ce qui ouvrira de nombreuses pistes th\u00e9rapeutiques.<\/p><p>Le centre de Tours a accueilli en 2019 le congres europ\u00e9en sur les maladies du motoneurones, l\u2019ENCALS.<\/p><p>L&#8217;Inserm U1253 iBraiN (Imagerie et Cerveau) est une unit\u00e9 mixte de recherche de l&#8217;Inserm et de l&#8217;Universit\u00e9 de Tours, dirig\u00e9e par Catherine Belzung. L&#8217;unit\u00e9 est organis\u00e9e en plusieurs \u00e9quipes de recherche, dont l&#8217;\u00e9quipe IDeALS, qui m\u00e8ne les travaux sur la Scl\u00e9rose lat\u00e9rale amyotrophique.<\/p><p>Au sein de l&#8217;UMR U1253, l&#8217;\u00e9quipe concern\u00e9e par la SLA est :<\/p><p><strong>\u00c9quipe IDeALS<\/strong><\/p><p>Neurog\u00e9nomique et physiopathologie des troubles du neurod\u00e9veloppement et des maladies du motoneurone<\/p><ul><li>Responsable : Fr\u00e9d\u00e9ric Laumonnier<\/li><li>Coresponsable : Patrick Vourc&#8217;h<\/li><\/ul><p><strong>Groupe de recherche \u00ab SLA \u00bb<\/strong><\/p><p>Responsable scientifique :<\/p><ul><li>Patrick Vourc&#8217;h<\/li><\/ul><p><strong>Chercheurs et cliniciens particuli\u00e8rement impliqu\u00e9s :<\/strong><\/p><ul><li>Philippe Corcia (neurologie, Centre SLA de Tours)<\/li><li>H\u00e9l\u00e8ne Blasco (biomarqueurs, m\u00e9tabolisme, nutrition)<\/li><li>Charlotte Veyrat-Durebex (m\u00e9tabolisme, mod\u00e8les exp\u00e9rimentaux)<\/li><li>Patrick Emond (m\u00e9tabolomique, imagerie, strat\u00e9gies th\u00e9rapeutiques)<\/li><li>Lydie Nadal-Desbarats (m\u00e9tabolomique)<\/li><li>Marie-Laure Vuillaume-Winter (m\u00e9decine g\u00e9nomique et transfert clinique)<\/li><\/ul><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1622\" class=\"elementor-tab-title\" data-tab=\"2\" role=\"button\" aria-controls=\"elementor-tab-content-1622\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\"><span style=\"text-transform: uppercase\"><strong>essais th\u00e9rapeutiques<\/strong><\/span><\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-1622\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"2\" role=\"region\" aria-labelledby=\"elementor-tab-title-1622\"><p><strong>PREVAILS \u2013 \u00c9tude de phase III visant \u00e0 \u00e9valuer l\u2019efficacit\u00e9 et la s\u00e9curit\u00e9 d\u2019emploi de la pridopidine dans la scl\u00e9rose lat\u00e9rale amyotrophique (SLA)<\/strong><\/p><p><strong>Objectif de l\u2019\u00e9tude<\/strong><br \/>Cette \u00e9tude vise \u00e0 \u00e9valuer l\u2019efficacit\u00e9 et la s\u00e9curit\u00e9 d\u2019emploi de la pridopidine chez l\u2019adulte atteint de scl\u00e9rose lat\u00e9rale amyotrophique (SLA). Elle cherche notamment \u00e0 d\u00e9terminer si la pridopidine permet de ralentir la progression de la maladie. La pridopidine sera compar\u00e9e \u00e0 un placebo afin d\u2019\u00e9valuer son efficacit\u00e9.<\/p><p><strong>D\u00e9roulement de l\u2019\u00e9tude<\/strong><br \/>Les participants recevront quotidiennement par voie orale de la pridopidine ou un placebo pendant une premi\u00e8re p\u00e9riode de 48 semaines. \u00c0 l\u2019issue de cette p\u00e9riode, tous les participants recevront de la pridopidine pendant 48 semaines suppl\u00e9mentaires. Des visites de suivi seront programm\u00e9es tous les 1 \u00e0 3 mois afin de r\u00e9aliser les examens cliniques et les analyses pr\u00e9vus dans le cadre de l\u2019\u00e9tude.<\/p><p><strong>Principaux crit\u00e8res d\u2019inclusion<\/strong><\/p><ul data-spread=\"false\"><li>Diagnostic de SLA certaine ou probable selon les crit\u00e8res d\u2019El Escorial.<\/li><li>D\u00e9but des sympt\u00f4mes depuis 18 mois ou moins au moment du d\u00e9pistage.<\/li><li>Capacit\u00e9 vitale lente \u2265 60 % de la valeur th\u00e9orique.<\/li><li>Score TRICALS\/ENCALS compris entre -6 et -2.<\/li><li>Capacit\u00e9 \u00e0 avaler une g\u00e9lule.<\/li><\/ul><p><strong>Principaux crit\u00e8res de non-inclusion<\/strong><\/p><ul data-spread=\"false\"><li>Trach\u00e9otomie ou ventilation assist\u00e9e permanente.<\/li><li>Certaines maladies cardiaques ou troubles du rythme significatifs.<\/li><li>Maladie psychiatrique instable, d\u00e9ficit cognitif, d\u00e9mence ou toxicomanie pouvant compromettre la participation \u00e0 l\u2019\u00e9tude.<\/li><li>Autre maladie cliniquement significative ou instable susceptible d\u2019interf\u00e9rer avec l\u2019\u00e9tude.<\/li><li>Traitement par des m\u00e9dicaments susceptibles de prolonger l\u2019intervalle QT.<\/li><li>Traitement ant\u00e9rieur par la pridopidine, une th\u00e9rapie g\u00e9nique ou des oligonucl\u00e9otides antisens.<\/li><li>Mutation confirm\u00e9e des g\u00e8nes <strong>SOD1, FUS ou C9orf72<\/strong>.<\/li><li>Grossesse.<\/li><\/ul><p><br \/><strong>Investigateur au CHRU de Tours :<\/strong> Pr Philippe CORCIA<br \/><strong>Statut :<\/strong> Recrutement en cours<\/p><p><strong>Centres participants : <\/strong>CHU de Tours, CHU de Lille, CHU de Marseille, CHU de Montpellier, CHU de Nice et le CHU de Paris.<\/p><p><strong>Pour en savoir plus :<\/strong> ClinicalTrials.gov \u2013 NCT07322003.<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1623\" class=\"elementor-tab-title\" data-tab=\"3\" role=\"button\" aria-controls=\"elementor-tab-content-1623\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\">\u00e9tudes acad\u00e9miques<\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-1623\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"3\" role=\"region\" aria-labelledby=\"elementor-tab-title-1623\"><p>En cours de recrutement\u00a0:<\/p><ul><li><strong>PREMODIALS<\/strong> : Identification d\u2019une signature clinique et mol\u00e9culaire pour les stades pr\u00e9symptomatiques et pr\u00e9coces de la SLA<\/li><\/ul><p>Objectif : Identifier des biomarqueurs de la SLA<\/p><p>Promoteur : Universit\u00e9 technique de Munich (TUM)<\/p><p><strong>En savoir plus\u00a0: <\/strong><a href=\"https:\/\/clinicaltrials.gov\/study\/NCT07213440\">https:\/\/clinicaltrials.gov\/study\/NCT07213440<\/a><\/p><ul><li><strong>FG-COALS<\/strong>: \u00c9tude de cohorte franco-allemande visant \u00e0 d\u00e9terminer les facteurs associ\u00e9s \u00e0 la perte de poids dans la scl\u00e9rose lat\u00e9rale amyotrophique<\/li><\/ul><p>Objectif : Identifier les marqueurs biologiques, g\u00e9n\u00e9tiques et d\u2019imagerie associ\u00e9s \u00e0 la perte de poids, en fonction de la pr\u00e9sentation clinique des patients atteints de SLA.<\/p><p>Promoteur : CHU de Limoges<\/p><p>Centre coordinateur national : Limoges<\/p><p><strong>En savoir plus\u00a0: <\/strong><a href=\"https:\/\/clinicaltrials.gov\/study\/NCT06147843\">https:\/\/clinicaltrials.gov\/study\/NCT06147843<\/a> elle est out.<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-52982fa3 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"52982fa3\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-6149970b\" data-id=\"6149970b\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-4581e3c elementor-view-stacked elementor-shape-circle elementor-widget elementor-widget-icon\" data-id=\"4581e3c\" data-element_type=\"widget\" data-widget_type=\"icon.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-icon-wrapper\">\n\t\t\t<div class=\"elementor-icon\">\n\t\t\t<i aria-hidden=\"true\" class=\"fas fa-book-reader\"><\/i>\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-345d590a elementor-widget elementor-widget-toggle\" data-id=\"345d590a\" data-element_type=\"widget\" data-widget_type=\"toggle.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-toggle\">\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-8781\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-8781\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\"><span style=\"text-transform: uppercase\"><strong>PUBLICATIONS<\/strong><\/span><\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-8781\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-8781\"><h4><strong>2026<\/strong><\/h4><ul><li>Corcia P, Bernard E, de la Cruz E, Danel V, Soriani MH, Guy N, Esselin F, Bruneteau G, Pradat PF, Goutines V, Catherine J, Eyraud N, Cheve P, Fernandez A, Erazo D, Couratier P.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/42168009\/\">Primary Lateral Sclerosis French National Diagnostic and Care Protocol.\u00a0<\/a>Rev Neurol (Paris).\u00a02026 May 21;.\u00a0doi: 10.1016\/j.neurol.2026.04.006.\u00a0[Epub ahead of print]\u00a0PubMed PMID: 42168009.<\/li><li>Vallikivi JK, Kooyman M, Project MinE ALS Sequencing Consortium, Kirby J, Nigel Leigh P, Iacoangeli A, Al-Chalabi A, Al Khleifat A.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/42161327\/\">CYP2D6 variants in amyotrophic lateral sclerosis: an association study of risk and survival.\u00a0<\/a>2026 May 20;.\u00a0doi: 10.1093\/brain\/awag178.\u00a0[Epub ahead of print]\u00a0PubMed PMID: 42161327.<\/li><li>Desnuelle C, Couratier P, Corcia P, Duburcq A, Torreton E, Baffert S, Nevoret C, Turgeman S.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/42000269\/\">Treatment pathway, healthcare resource utilization and direct cost of ALS in France: A nationwide claims database study.\u00a0<\/a>Rev Neurol (Paris).\u00a02026 Apr 17;.\u00a0doi: 10.1016\/j.neurol.2026.02.159.\u00a0[Epub ahead of print]\u00a0PubMed PMID: 42000269.<\/li><li>Theuriet J, Quadrio I, Fer F, Monin P, Bohic A, Gravier-Dumonceau A, Poinsignon V, Delmont E, Salort-Campana E, Attarian S, Nollet S, Petiot P, Ronsin S, Peysson S, Lozeron P, Bouhour F, Corcia P, Pegat A, Stojkovic T.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/41989263\/\">Clinical Features and Prognosis of SEPTIN9-Related Hereditary Neuralgic Amyotrophy.\u00a0<\/a>Eur J Neurol.\u00a02026 Apr;33(4):e70603.\u00a0doi: 10.1111\/ene.70603.\u00a0PubMed PMID: 41989263; PubMed Central PMCID: PMC13085897.<\/li><li>Desnuelle C, Couratier P, Corcia P, Arcelin T, Nevoret C, Duburcq A, Baffert S, Turgeman S.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/41917957\/\">The economic burden of amyotrophic lateral sclerosis for patients and families: a survey on out-of-pocket expenses and income loss in France.\u00a0<\/a>Orphanet J Rare Dis.\u00a02026 Mar 31;21(1).\u00a0doi: 10.1186\/s13023-026-04326-1.\u00a0PubMed PMID: 41917957; PubMed Central PMCID: PMC13162408.<\/li><li>Hop PJ, Kooyman M, Kenna BJ, Zwamborn RAJ, van Eijk KR, Wang Y, van Dijk CH, Bekema E, van Rheenen W, Beele P, van Vugt JJFA, Project MinE ALS sequencing Consortium, NYGC ALS Consortium, FALS sequencing Consortium, GTAC Consortium, Khleifat AA, Iacoangeli A, Cooper-Knock J, Smith BN, Topp S, van der Kooi AJ, Fominykh V, Drory V, Lerner Y, Shovman Y, Rowe DB, Williams KL, McLaughlin RL, Hurt J, Huang Y, Chen CY, Tsai E, Runz H, Aronica E, Groen EJN, van Es MA, Pasterkamp RJ, Farhan SMK, Garton FC, McRae AF, McCombe PA, Henderson RD, Fan D, \u0160lachtov\u00e1 L, H\u00f8yer H, Nishimura AL, Cauchi RJ, Brylev L, Rogelj B, Koritnik B, Zidar J, Salas T, Mora Pardina JS, Gotkine M, Povedano M, Corcia P, Vourc&#8217;h P, Couratier P, Weber M, Kiernan MC, Pamphlett R, Blair IP, de Carvalho M, Ba\u015fak NA, Ingre C, Andersen PM, Zinman L, Rogaeva E, MacKenzie IR, Dupre N, Rouleau GA, Traynor BJ, Ticozzi N, Chi\u00f2 A, Silani V, Hardiman O, Phatnani H, Harms MB, Dalgard CL, Glass JD, Landers JE, Van Damme P, Morrison KE, Shaw PJ, Shaw CE, Al-Chalabi A, van den Berg LH, Kenna KP, Veldink JH.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/41917433\/\">Large-scale exome analyses reveal new rare variant contributions in amyotrophic lateral sclerosis.\u00a0<\/a>Nat Genet.\u00a02026 Apr;58(4):717-725.\u00a0doi: 10.1038\/s41588-026-02535-9.\u00a0Epub 2026 Mar 31.\u00a0PubMed PMID: 41917433; PubMed Central PMCID: PMC13083253.<\/li><li>Hodgson RE, Huang WP, Lang R, Kumar V, An H, Stender EGP, Chalakova ZP, Driver MD, Sanchez Avila A, Ellis BCS, Day E, Rayment JA, Baeg K, Strange A, Moll T, Wright GSA, van Vugt JJFA, Project MinE ALS Sequencing Consortium, Allen SP, Locker N, Pitout I, Fletcher S, Onck PR, Duss O, Cooper-Knock J, Shelkovnikova TA.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/41851271\/\">Paraspeckle condensation is controlled via TDP-43 polymerization and linked to neuroprotection.\u00a0<\/a>Nat Cell 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observational study within PRECISION-ALS.\u00a0<\/a>Amyotroph Lateral Scler Frontotemporal Degener.\u00a02025;26(sup1):41-49.\u00a0doi: 10.1080\/21678421.2025.2450805.\u00a0Epub 2025 May 6.\u00a0PubMed PMID: 40326912.<\/li><li>Shefner JM, Cudkowicz ME, Genge A, Hardiman O, Al-Chalabi A, Andrews JA, Chio A, Corcia P, Couratier P, de Carvalho M, Heiman-Patterson T, Henderson RD, Ingre C, Johnston W, Ludolph A, Maragakis NJ, Miller TM, Mora JS, Petri S, Simmons Z, van den Berg LH, Zinman L, Kupfer S, Malik FI, Meng L, Simkins TJ, Wei J, Wolff AA, Rudnicki SA, COURAGE-ALS Study Group.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/40126464\/\">Reldesemtiv in Amyotrophic Lateral Sclerosis: Results From the COURAGE-ALS Randomized Clinical Trial.\u00a0<\/a>JAMA Neurol.\u00a02025 May 1;82(5):477-485.\u00a0doi: 10.1001\/jamaneurol.2025.0241.\u00a0PubMed PMID: 40126464; PubMed Central PMCID: PMC11933997.<\/li><li>De Bertier S, Lautrette G, Amador MD, Miki T, Boill\u00e9e S, Lobsiger CS, Bohl D, Darios F, Machat S, Duchesne M, Vourc&#8217;h P, Fauret-Amsellem AL, Corcia P, Guy N, Couratier P, Seilhean D, Millecamps S.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/40100285\/\">MAPT mutations in amyotrophic lateral sclerosis: clinical, neuropathological and functional insights.\u00a0<\/a>J Neurol.\u00a02025 Mar 18;272(4):272.\u00a0doi: 10.1007\/s00415-025-13007-1.\u00a0PubMed PMID: 40100285; PubMed Central PMCID: PMC11920346.<\/li><li>Sapaly D, Cheguillaume F, Weill L, Clerc Z, Biondi O, Bendris S, Buon C, Slika R, Piller E, Sundaram VK, da Silva Ramos A, Amador MDM, Lenglet T, Debs R, Le Forestier N, Pradat PF, Salachas F, Lacomblez L, Hesters A, Borderie D, Devos D, Desnuelle C, Rolland AS, Periou B, Vasseur S, Chapart M, Le Ber I, Fauret-Amsellem AL, Millecamps S, Maisonobe T, Leonard-Louis S, Behin A, Authier FJ, Evangelista T, Charbonnier F, Bruneteau G.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/39197036\/\">Dysregulation of muscle cholesterol transport in amyotrophic lateral sclerosis.\u00a0<\/a>2025 Mar 6;148(3):788-802.\u00a0doi: 10.1093\/brain\/awae270.\u00a0PubMed PMID: 39197036; PubMed Central PMCID: PMC11884649.<\/li><li>Al Ojaimi Y, Vallet N, Dangoumau A, Lanznaster D, Bruno C, Lefevre A, Osman S, Dupuy C, Emond P, Vourc&#8217;h P, Corcia P, Krupova Z, Veyrat-Durebex C, Blasco H.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/39954028\/\">Metabolomic and Proteomic Profiling of Serum-Derived Extracellular Vesicles from Early-Stage Amyotrophic Lateral Sclerosis Patients.\u00a0<\/a>J Mol Neurosci.\u00a02025 Feb 15;75(1):21.\u00a0doi: 10.1007\/s12031-025-02315-w.\u00a0PubMed PMID: 39954028.<\/li><\/ul><h4><strong>2024<\/strong><\/h4><ul><li>de Boer EMJ, de Vries BS, Van Hecke W, M\u00fchlebner A, Vincken KL, Mol CP, van Rheenen W, Westeneng HJ, Veldink JH, H\u00f6glinger GU, Morris HR, Litvan I, Raaphorst J, Ticozzi N, Corcia P, Vandenberghe W, Pijnenburg YAL, Seelaar H, Ingre C, Van Damme P, van den Berg LH, van de Warrenburg BPC, van Es MA.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/39666071\/\">Diagnosing primary lateral sclerosis: a clinico-pathological study.\u00a0<\/a>J Neurol.\u00a02024 Dec 12;272(1):46.\u00a0doi: 10.1007\/s00415-024-12816-0.\u00a0PubMed PMID: 39666071.<\/li><li>Veyrat-Durebex C, Osman S, Al Ojaimi Y, Gosset P, Dupuy C, Lefevre A, Emond P, Vourc&#8217;h P, Corcia P, Mereghetti L, Kempf F, Raoul C, Blasco H.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/39611550\/\">Gut metabolomic and microbiota analyses in ALS mice reveal specific metabolites despite the absence of significant gut dysbiosis.\u00a0<\/a>Amyotroph Lateral Scler Frontotemporal Degener.\u00a02025 May;26(3-4):368-374.\u00a0doi: 10.1080\/21678421.2024.2433578.\u00a0Epub 2024 Nov 29.\u00a0PubMed PMID: 39611550.<\/li><li>Grant OA, Iacoangeli A, Zwamborn RAJ, van Rheenen W, Byrne R, Van Eijk KR, Kenna K, van Vugt JJFA, Cooper-Knock J, Kenna B, Vural A, Topp S, Campos Y, Weber M, Smith B, Dobson R, van Es MA, Vourc&#8217;h P, Corcia P, de Carvalho M, Gotkine M, Panades MP, Mora JS, Mill J, Garton F, McRae A, Wray NR, Shaw PJ, Landers JE, Glass JD, Shaw CE, Basak N, Hardiman O, Van Damme P, McLaughlin RL, van den Berg LH, Veldink JH, Al-Chalabi A, Al Khleifat A.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/39651197\/\">Sex-specific DNA methylation differences in Amyotrophic lateral sclerosis.\u00a0<\/a>2024 Nov 25;.\u00a0doi: 10.1101\/2024.11.22.624866.\u00a0PubMed PMID: 39651197; PubMed Central PMCID: PMC11623544.<\/li><li>Koch JC, Leha A, Bidner H, Cordts I, Dorst J, G\u00fcnther R, Zeller D, Braun N, Metelmann M, Corcia P, De La Cruz E, Weydt P, Meyer T, Gro\u00dfkreutz J, Soriani MH, Attarian S, Weishaupt JH, Weyen U, Kuttler J, Zurek G, Rogers ML, Feneberg E, Deschauer M, Neuwirth C, Wuu J, Ludolph AC, Schmidt J, Remane Y, Camu W, Friede T, Benatar M, Weber M, Lingor P, ROCK-ALS Study group.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/39424560\/\">Safety, tolerability, and efficacy of fasudil in amyotrophic lateral sclerosis (ROCK-ALS): a phase 2, randomised, double-blind, placebo-controlled trial.\u00a0<\/a>Lancet Neurol.\u00a02024 Nov;23(11):1133-1146.\u00a0doi: 10.1016\/S1474-4422(24)00373-9.\u00a0PubMed PMID: 39424560; PubMed Central PMCID: PMC12741558.<\/li><li>Paubel A, Marouillat S, Dangoumau A, Maurel C, Haouari S, Blasco H, Corcia P, Laumonnier F, Andres CR, Vourc&#8217;h P.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/39596581\/\">Dynamic Expression of Genes Encoding Ubiquitin Conjugating Enzymes (E2s) During Neuronal Differentiation and Maturation: Implications for Neurodevelopmental Disorders and Neurodegenerative Diseases.\u00a0<\/a>Genes (Basel).\u00a02024 Oct 26;15(11).\u00a0doi: 10.3390\/genes15111381.\u00a0PubMed PMID: 39596581; PubMed Central PMCID: PMC11593721.<\/li><li>Saez-Atienzar S, Souza CDS, Chia R, Beal SN, Lorenzini I, Huang R, Levy J, Burciu C, Ding J, Gibbs JR, Jones A, Dewan R, Pensato V, Peverelli S, Corrado L, van Vugt JJFA, van Rheenen W, Tunca C, Bayraktar E, Xia M, International ALS Genomics Consortium, ITALSGEN Consortium, SLAGEN Consortium, Project MinE ALS Sequencing Consortium, Iacoangeli A, Shatunov A, Tiloca C, Ticozzi N, Verde F, Mazzini L, Kenna K, Al Khleifat A, Opie-Martin S, Raggi F, Filosto M, Piccinelli SC, Padovani A, Gagliardi S, Inghilleri M, Ferlini A, Vasta R, Calvo A, Moglia C, Canosa A, Manera U, Grassano M, Mandrioli J, Mora G, Lunetta C, Tanel R, Trojsi F, Cardinali P, Gallone S, Brunetti M, Galimberti D, Serpente M, Fenoglio C, Scarpini E, Comi GP, Corti S, Del Bo R, Ceroni M, Pinter GL, Taroni F, Bella ED, Bersano E, Curtis CJ, Lee SH, Chung R, Patel H, Morrison KE, Cooper-Knock J, Shaw PJ, Breen G, Dobson RJB, Dalgard CL, American Genome Center, Scholz SW, Al-Chalabi A, van den Berg LH, McLaughlin R, Hardiman O, Cereda C, Sorar\u00f9 G, D&#8217;Alfonso S, Chandran S, Pal S, Ratti A, Gellera C, Johnson K, Doucet-O&#8217;Hare T, Pasternack N, Wang T, Nath A, Siciliano G, Silani V, Ba\u015fak AN, Veldink JH, Camu W, Glass JD, Landers JE, Chi\u00f2 A, Sattler R, Shaw CE, Ferraiuolo L, Fogh I, Traynor BJ.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/39437787\/\">Mechanism-free repurposing of drugs for C9orf72-related ALS\/FTD using large-scale genomic data.\u00a0<\/a>Cell Genom.\u00a02024 Nov 13;4(11):100679.\u00a0doi: 10.1016\/j.xgen.2024.100679.\u00a0Epub 2024 Oct 21.\u00a0PubMed PMID: 39437787; PubMed Central PMCID: PMC11605688.<\/li><li>Corcia P, Piras R, Lunetta C.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/39392186\/\">Why is the treatment and management of amyotrophic lateral sclerosis so difficult?.\u00a0<\/a>Expert Rev Neurother.\u00a02025 Jan;25(1):1-3.\u00a0doi: 10.1080\/14737175.2024.2415002.\u00a0Epub 2024 Oct 11.\u00a0PubMed PMID: 39392186.<\/li><li>Khanna RK, Catanese S, Mortemousque G, Dupuy C, Lefevre A, Emond P, Beltran S, Gissot V, Pisella PJ, Blasco H, Corcia P.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/39349171\/\">Metabolomics of basal tears in amyotrophic lateral sclerosis: A cross-sectional study.\u00a0<\/a>Ocul Surf.\u00a02024 Oct;34:363-369.\u00a0doi: 10.1016\/j.jtos.2024.09.005.\u00a0Epub 2024 Sep 28.\u00a0PubMed PMID: 39349171.<\/li><li>Khanna RK, Catanese S, Mortemousque G, Mureau N, Emond P, Pisella PJ, Blasco H, Corcia P.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/39302063\/\">Exploring amyotrophic lateral sclerosis through the visual system: A systematic review.\u00a0<\/a>Eur J Neurol.\u00a02024 Dec;31(12):e16475.\u00a0doi: 10.1111\/ene.16475.\u00a0Epub 2024 Sep 20.\u00a0PubMed PMID: 39302063; PubMed Central PMCID: PMC11555009.<\/li><li>Chami AA, Bedja-Iacona L, Richard E, Lanznaster D, Marouillat S, Veyrat-Durebex C, Andres CR, Corcia P, Blasco H, Vourc&#8217;h P.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/39336748\/\">N-Terminal Fragments of TDP-43-In Vitro Analysis and Implication in the Pathophysiology of Amyotrophic Lateral Sclerosis and Frontotemporal Lobar Degeneration.\u00a0<\/a>Genes (Basel).\u00a02024 Sep 1;15(9).\u00a0doi: 10.3390\/genes15091157.\u00a0PubMed PMID: 39336748; PubMed Central PMCID: PMC11430844.<\/li><li>Bedja-Iacona L, Richard E, Marouillat S, Brulard C, Alouane T, Beltran S, Andres CR, Blasco H, Corcia P, Veyrat-Durebex C, Vourc&#8217;h P.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/39201350\/\">Post-Translational Variants of Major Proteins in Amyotrophic Lateral Sclerosis Provide New Insights into the Pathophysiology of the Disease.\u00a0<\/a>Int J Mol Sci.\u00a02024 Aug 8;25(16).\u00a0doi: 10.3390\/ijms25168664.\u00a0Review.\u00a0PubMed PMID: 39201350; PubMed Central PMCID: PMC11354932.<\/li><li>Codron P, Millecamps S, Corcia P.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/39069396\/\">EVolution in ALS diagnosis: molecular markers in extracellular vesicles.\u00a0<\/a>Trends Mol Med.\u00a02024 Dec;30(12):1097-1099.\u00a0doi: 10.1016\/j.molmed.2024.07.006.\u00a0Epub 2024 Jul 27.\u00a0PubMed PMID: 39069396.<\/li><li>Huin V, Blum D, Delforge V, Cailliau E, Djeziri S, Dujardin K, Genet A, Viard R, Attarian S, Bruneteau G, Cassereau J, Genestet S, Kaminsky AL, Soriani MH, Lefilliatre M, Couratier P, Pittion-Vouyovitch S, Esselin F, De La Cruz E, Guy N, Kolev I, Corcia P, Cintas P, Desnuelle C, Bu\u00e9e L, Danel-Brunaud V, Devos D, Rolland AS.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/39002811\/\">Caffeine consumption outcomes on amyotrophic lateral sclerosis disease progression and cognition.\u00a0<\/a>Neurobiol Dis.\u00a02024 Sep;199:106603.\u00a0doi: 10.1016\/j.nbd.2024.106603.\u00a0Epub 2024 Jul 11.\u00a0PubMed PMID: 39002811.<\/li><li>Corcia P, Guy N, Pradat PF, Soriani MH, Verschueren A, Couratier P.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/38973130\/\">Treatment continuity of amyotrophic lateral sclerosis with available riluzole formulations: state of the art and current challenges in a &#8216;real-world&#8217; setting.\u00a0<\/a>Amyotroph Lateral Scler Frontotemporal Degener.\u00a02025 Feb;26(1-2):15-21.\u00a0doi: 10.1080\/21678421.2024.2375330.\u00a0Epub 2024 Jul 7.\u00a0Review.\u00a0PubMed PMID: 38973130.<\/li><li>Ta\u015f G, Westerdijk T, Postma E, Project MinE ALS GWAS Consortium, Veldink JH, Sch\u00f6nhuth A, Balvert M.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/38775680\/\">Computing linkage disequilibrium aware genome embeddings using autoencoders.\u00a0<\/a>2024 Jun 3;40(6).\u00a0doi: 10.1093\/bioinformatics\/btae326.\u00a0PubMed PMID: 38775680; PubMed Central PMCID: PMC11208726.<\/li><li>Corcia P, Couratier P, Ingre C.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/38782644\/\">Could PLS represent a UMN-predominant ALS syndrome?.\u00a0<\/a>Rev Neurol (Paris).\u00a02025 Jan-Feb;181(1-2):52-57.\u00a0doi: 10.1016\/j.neurol.2024.04.006.\u00a0Epub 2024 May 22.\u00a0Review.\u00a0PubMed PMID: 38782644.<\/li><li>Marriott H, Spargo TP, Al Khleifat A, Andersen PM, Ba\u015fak NA, Cooper-Knock J, Corcia P, Couratier P, de Carvalho M, Drory V, Gotkine M, Landers JE, McLaughlin R, Pardina JSM, Morrison KE, Pinto S, Shaw CE, Shaw PJ, Silani V, Ticozzi N, van Damme P, van den Berg LH, Vourc&#8217;h P, Weber M, Veldink JH, Project MinE ALS Sequencing Consortium, Dobson RJ, Schwab P, Al-Chalabi A, Iacoangeli A.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/38775181\/\">Mutations in the tail and rod domains of the neurofilament heavy-chain gene increase the risk of ALS.\u00a0<\/a>Ann Clin Transl Neurol.\u00a02024 Jul;11(7):1775-1786.\u00a0doi: 10.1002\/acn3.52083.\u00a0Epub 2024 May 22.\u00a0PubMed PMID: 38775181; PubMed Central PMCID: PMC11251467.<\/li><li>Alarcan H, Bruno C, Emond P, Raoul C, Vourc&#8217;h P, Corcia P, Camu W, Veyrune JL, Garlanda C, Locati M, Juntas-Morales R, Saker S, Suehs C, Masseguin C, Kirby J, Shaw P, Malaspina A, De Vos J, Al-Chalabi A, Leigh PN, Tree T, Bensimon G, Blasco H.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/38771698\/\">Pharmacometabolomics applied to low-dose interleukin-2 treatment in amyotrophic lateral sclerosis.\u00a0<\/a>Ann N Y Acad Sci.\u00a02024 Jun;1536(1):82-91.\u00a0doi: 10.1111\/nyas.15147.\u00a0Epub 2024 May 21.\u00a0PubMed PMID: 38771698.<\/li><li>Fernandez A, Guenegou L, Corcia P, Bailly N.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/38745521\/\">The effect of social support on the emotional well-being of people with amyotrophic lateral sclerosis: Exploring the mediating role of spirituality.\u00a0<\/a>Palliat Support Care.\u00a02024 May 15;:1-8.\u00a0doi: 10.1017\/S1478951524000610.\u00a0[Epub ahead of print]\u00a0PubMed PMID: 38745521.<\/li><li>Ludolph AC, Corcia P, Desnuelle C, Heiman-Patterson T, Mora JS, Mansfield CD, Couratier P.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/38712849\/\">Categorization of the amyotrophic lateral sclerosis population via the clinical determinant of post-onset \u0394FS for study design and medical practice.\u00a0<\/a>Muscle Nerve.\u00a02024 Jul;70(1):36-41.\u00a0doi: 10.1002\/mus.28101.\u00a0Epub 2024 May 7.\u00a0PubMed PMID: 38712849.<\/li><li>Sellier C, Corcia P, Vourc&#8217;h P, Dupuis L.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/38609750\/\">C9ORF72 hexanucleotide repeat expansion: From ALS and FTD to a broader pathogenic role?.\u00a0<\/a>Rev Neurol (Paris).\u00a02024 May;180(5):417-428.\u00a0doi: 10.1016\/j.neurol.2024.03.008.\u00a0Epub 2024 Apr 11.\u00a0Review.\u00a0PubMed PMID: 38609750.<\/li><li>Khanna RK, Catanese S, Blasco H, Pisella PJ, Corcia P.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/38498118\/\">Corneal nerves and amyotrophic lateral sclerosis: an in vivo corneal confocal imaging study.\u00a0<\/a>J Neurol.\u00a02024 Jun;271(6):3370-3377.\u00a0doi: 10.1007\/s00415-024-12282-8.\u00a0Epub 2024 Mar 18.\u00a0PubMed PMID: 38498118.<\/li><li>Corcia P, Couratier P.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/38429156\/\">Spreading of motor neuron degeneration in ALS is not so random.\u00a0<\/a>Rev Neurol (Paris).\u00a02024 Jun;180(6):475-476.\u00a0doi: 10.1016\/j.neurol.2024.02.384.\u00a0Epub 2024 Feb 29.\u00a0PubMed PMID: 38429156.<\/li><li>Al Ojaimi Y, Slek C, Osman S, Alarcan H, Marouillat S, Corcia P, Vourc&#8217;h P, Lanznaster D, Blasco H.\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/38389507\/\">The effect of pH alterations on TDP-43 in a cellular model of amyotrophic lateral sclerosis.\u00a0<\/a>Biochem Biophys Rep.\u00a02024 Jul;38:101664.\u00a0doi: 10.1016\/j.bbrep.2024.101664.\u00a0eCollection 2024 Jul.\u00a0PubMed PMID: 38389507; PubMed Central PMCID: PMC10882110.<\/li><\/ul><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-39955632 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"39955632\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-78798438\" data-id=\"78798438\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-3c965fc elementor-widget elementor-widget-image\" data-id=\"3c965fc\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t<figure class=\"wp-caption\">\n\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"263\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/enseignement-300x263-1.png\" class=\"attachment-medium size-medium wp-image-365\" alt=\"\" \/>\t\t\t\t\t\t\t\t\t\t\t<figcaption class=\"widget-image-caption wp-caption-text\">ENSEIGNEMENT<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2542ff elementor-widget elementor-widget-toggle\" data-id=\"2542ff\" data-element_type=\"widget\" data-widget_type=\"toggle.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-toggle\">\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-2441\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-2441\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\"><span style=\"text-transform: uppercase\"><strong>Enseignement<\/strong><\/span><\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-2441\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-2441\"><h4><strong>Formation Internes du 3<sup>\u00e8me<\/sup> cycle<\/strong><\/h4><ul><li>Formations Sp\u00e9cialis\u00e9es Transversales (FST)<\/li><\/ul><h4><strong>Les Formations Post-Universitaires\u00a0<\/strong><\/h4><ul><li><b>DU Maladies du Motoneurone (D\u00e8s septembre 2026)<\/b><\/li><li><b>MASTER Sciences, Technologies, Sant\u00e9 MENTION Biologie &#8211; Sant\u00e9 PARCOURS Cognition, Neurosciences et Psychologie <\/b><a href=\"http:\/\/www.univ-tours.fr\" target=\"_blank\" rel=\"noopener\"><u>www.univ-tours.fr<\/u><\/a><\/li><\/ul><h4><strong>Autres Formations<\/strong><\/h4><ul><li><strong>Formation E-Learning sur la SLA<\/strong> (destin\u00e9e aux professionnels de sant\u00e9 intervenants au domicile et aux aidants)<br \/><a href=\"https:\/\/portail-sla.fr\/formation-e-learning-sur-la-sla\/\" target=\"_blank\" rel=\"noopener\" class=\"broken_link\">https:\/\/portail-sla.fr\/formation-e-learning-sur-la-sla\/<\/a><\/li><li><strong>E-Learning Echelle Fonctionnelle de la SLA<br \/><\/strong><a href=\"https:\/\/www.encals.eu\/outcome-measures\/\" target=\"_blank\" rel=\"noopener\">https:\/\/www.encals.eu\/outcome-measures\/<\/a><\/li><\/ul><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-5c039d85 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"5c039d85\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-1f276d99\" data-id=\"1f276d99\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-7e9db6da elementor-widget elementor-widget-image\" data-id=\"7e9db6da\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t<figure class=\"wp-caption\">\n\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"212\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/outils-300x212-1.png\" class=\"attachment-medium size-medium wp-image-367\" alt=\"\" \/>\t\t\t\t\t\t\t\t\t\t\t<figcaption class=\"widget-image-caption wp-caption-text\">OUTILS<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-146b7f23 elementor-widget elementor-widget-toggle\" data-id=\"146b7f23\" data-element_type=\"widget\" data-widget_type=\"toggle.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-toggle\">\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-3421\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-3421\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\"><span style=\"text-transform: uppercase\"><strong>Outils<\/strong><\/span><\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-3421\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-3421\"><p><strong>PNDS (Protocole National de Diagnostic et de Soins)<\/strong><\/p><blockquote><p>D\u00e9finition HAS :<\/p><p><em><strong>L\u2019objectif d\u2019un PNDS<\/strong> est d\u2019expliciter aux professionnels concern\u00e9s la prise en charge diagnostique et th\u00e9rapeutique optimale actuelle et le parcours de soins d\u2019un patient atteint d\u2019une maladie rare donn\u00e9e. Il a pour but d\u2019optimiser et d\u2019harmoniser la prise en charge et le suivi de la maladie rare sur l\u2019ensemble du territoire.<\/em><\/p><p><em>Le PNDS peut servir de r\u00e9f\u00e9rence au m\u00e9decin traitant (m\u00e9decin d\u00e9sign\u00e9 par le patient aupr\u00e8s de la Caisse d\u2019Assurance Maladie) en concertation avec le m\u00e9decin sp\u00e9cialiste notamment au moment d\u2019\u00e9tablir le protocole de soins conjointement avec le m\u00e9decin conseil et le patient, dans le cas d&#8217;une demande d&#8217;exon\u00e9ration du ticket mod\u00e9rateur au titre d&#8217;une affection hors liste.<\/em><\/p><\/blockquote><ul><li><strong>SCL\u00c9ROSE LAT\u00c9RALE AMYOTROPHIQUE<\/strong> (novembre 2015)<br \/><a href=\"https:\/\/www.has-sante.fr\/jcms\/c_2573383\/fr\/sclerose-laterale-amyotrophique\" target=\"_blank\" rel=\"noopener\">https:\/\/www.has-sante.fr\/jcms\/c_2573383\/fr\/sclerose-laterale-amyotrophique<\/a><\/li><li><strong>AMYOTROPHIE BULBO-SPINALE LI\u00c9E \u00c0 L\u2019X OU MALADIE DE KENNEDY<\/strong> (juin 2017)<br \/><a href=\"https:\/\/www.has-sante.fr\/jcms\/c_2776017\/fr\/amyotrophie-bulbo-spinale-liee-a-l-x-ou-maladie-de-kennedy\" target=\"_blank\" rel=\"noopener\">https:\/\/www.has-sante.fr\/jcms\/c_2776017\/fr\/amyotrophie-bulbo-spinale-liee-a-l-x-ou-maladie-de-kennedy<\/a><\/li><\/ul><p><strong>Recommandations de Bonnes Pratiques<\/strong><\/p><ul><li><strong>LES DIRECTIVES ANTICIP\u00c9ES<\/strong> (janvier 2017)<br \/><a href=\"https:\/\/www.has-sante.fr\/jcms\/c_2722363\/fr\/pour-tous-comment-rediger-vos-directives-anticipees\" target=\"_blank\" rel=\"noopener\">https:\/\/www.has-sante.fr\/jcms\/c_2722363\/fr\/pour-tous-comment-rediger-vos-directives-anticipees<\/a><\/li><li><strong>LA PERSONNE DE CONFIANCE<\/strong><br \/><a href=\"https:\/\/solidarites-sante.gouv.fr\/systeme-de-sante-et-medico-social\/parcours-de-sante-vos-droits\/modeles-et-documents\/guide-usagers-votre-sante-vos-droits\/article\/fiche-9-la-personne-de-confiance-215415\" target=\"_blank\" rel=\"noopener\">https:\/\/solidarites-sante.gouv.fr\/systeme-de-sante-et-medico-social\/parcours-de-sante-vos-droits\/modeles-et-documents\/guide-usagers-votre-sante-vos-droits\/article\/fiche-9-la-personne-de-confiance-215415<\/a><\/li><li><strong>COMMENT METTRE EN \u0152UVRE UNE S\u00c9DATION PROFONDE ET CONTINUE MAINTENUE JUSQU\u2019AU D\u00c9C\u00c8S ?<\/strong> (mars 2018)<br \/><a href=\"https:\/\/www.has-sante.fr\/jcms\/c_2832000\/fr\/comment-mettre-en-oeuvre-une-sedation-profonde-et-continue-maintenue-jusqu-au-deces\" target=\"_blank\" rel=\"noopener\">https:\/\/www.has-sante.fr\/jcms\/c_2832000\/fr\/comment-mettre-en-oeuvre-une-sedation-profonde-et-continue-maintenue-jusqu-au-deces<\/a><\/li><li><strong>Prise en charge des personnes atteintes de scl\u00e9rose lat\u00e9rale amyotrophique<\/strong> (f\u00e9vrier 2006)<br \/><a href=\"https:\/\/www.has-sante.fr\/jcms\/c_409014\/fr\/prise-en-charge-des-personnes-atteintes-de-sclerose-laterale-amyotrophique\" target=\"_blank\" rel=\"noopener\">https:\/\/www.has-sante.fr\/jcms\/c_409014\/fr\/prise-en-charge-des-personnes-atteintes-de-sclerose-laterale-amyotrophique<\/a><\/li><\/ul><p><strong>Carte d&#8217;urgence<\/strong><\/p><ul><li><strong>SCL\u00c9ROSE LAT\u00c9RALE AMYOTROPHIQUE<\/strong><br \/><a href=\"https:\/\/www.orpha.net\/consor\/cgi-bin\/Disease_Emergency.php?lng=FR\" target=\"_blank\" rel=\"noopener\">https:\/\/www.orpha.net\/consor\/cgi-bin\/Disease_Emergency.php?lng=FR<\/a><\/li><\/ul><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-2b17714e elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"2b17714e\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-3e22f0c6\" data-id=\"3e22f0c6\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-62fe566c elementor-widget elementor-widget-image\" data-id=\"62fe566c\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t<figure class=\"wp-caption\">\n\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"192\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/02\/liens-300x192-1.png\" class=\"attachment-medium size-medium wp-image-370\" alt=\"\" \/>\t\t\t\t\t\t\t\t\t\t\t<figcaption class=\"widget-image-caption wp-caption-text\">LIENS<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-1efaeb57 elementor-widget elementor-widget-toggle\" data-id=\"1efaeb57\" data-element_type=\"widget\" data-widget_type=\"toggle.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-toggle\">\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-5191\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-5191\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\"><span style=\"text-transform: uppercase\"><strong>Liens<\/strong><\/span><\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-5191\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-5191\"><p style=\"padding-left: 40px;\">\u00a0<\/p><h4>Recherche et essais th\u00e9rapeutiques<\/h4><ul><li><strong>TRICALS \u2013 Plateforme europ\u00e9enne d\u2019essais cliniques dans la SLA<br \/><\/strong>R\u00e9seau europ\u00e9en permettant de faciliter l\u2019acc\u00e8s aux essais th\u00e9rapeutiques et d\u2019acc\u00e9l\u00e9rer le d\u00e9veloppement de nouveaux traitements.<br \/><a href=\"https:\/\/www.tricals.org\/\">https:\/\/www.tricals.org\/<\/a><\/li><\/ul><ul><li><strong>ENCALS \u2013 European Network for the Cure of ALS<br \/><\/strong>R\u00e9seau europ\u00e9en regroupant des centres experts et des chercheurs impliqu\u00e9s dans la recherche sur la SLA.<br \/><a href=\"https:\/\/www.encals.eu\/\">https:\/\/www.encals.eu\/<\/a><\/li><\/ul><ul><li><strong>Project MinE \u2013 Recherche g\u00e9n\u00e9tique internationale sur la SLA<br \/><\/strong>Projet international visant \u00e0 identifier les facteurs g\u00e9n\u00e9tiques impliqu\u00e9s dans la SLA afin d\u2019am\u00e9liorer la compr\u00e9hension de la maladie et d\u00e9velopper de nouvelles approches th\u00e9rapeutiques.<br \/><a href=\"https:\/\/www.projectmine.com\/\">https:\/\/www.projectmine.com\/<\/a><\/li><\/ul><ul><li><strong>PRECISION-ALS<br \/><\/strong>Programme de recherche europ\u00e9en visant \u00e0 d\u00e9velopper une approche personnalis\u00e9e dans la SLA.<br \/>https:\/\/www.tricals.org\/precisionals\u00a0<\/li><\/ul><h4>R\u00e9seaux maladies rares<\/h4><ul><li><strong>FILSLAN \u2013 Fili\u00e8re de sant\u00e9 maladies rares SLA et maladies du neurone moteur<\/strong> Coordination nationale des acteurs impliqu\u00e9s dans la prise en charge et la recherche sur la SLA.<br \/><a href=\"https:\/\/portail-sla.fr\/\">https:\/\/portail-sla.fr\/<\/a><\/li><\/ul><ul><li><strong>ERN Euro-NMD \u2013 R\u00e9seau europ\u00e9en de r\u00e9f\u00e9rence des maladies neuromusculaires<\/strong><br \/>R\u00e9seau europ\u00e9en favorisant la collaboration entre centres experts dans les maladies neuromusculaires rares.<br \/><a href=\"https:\/\/www.ern-euro-nmd.eu\/\">https:\/\/www.ern-euro-nmd.eu\/<\/a><\/li><\/ul><h4>Recherche et innovation \u2013 CHRU de Tours<\/h4><ul><li><strong>Centre d\u2019Investigation Clinique (CIC) \u2013 CHRU de Tours<br \/><\/strong>Le CIC accompagne la r\u00e9alisation des \u00e9tudes cliniques et des essais th\u00e9rapeutiques.<br \/><a href=\"https:\/\/www.chu-tours.fr\/recherche\/centre-dinvestigation-clinique\/\">https:\/\/www.chu-tours.fr\/recherche\/centre-dinvestigation-clinique\/<\/a><\/li><\/ul><ul><li><strong>Unit\u00e9 Inserm U1253 iBrain \u2013 Universit\u00e9 de Tours<\/strong><\/li><li><strong>Equipe 3 IdeALS<br \/><\/strong>Unit\u00e9 de recherche impliqu\u00e9e notamment dans l\u2019\u00e9tude des m\u00e9canismes de la SLA, des biomarqueurs et des facteurs g\u00e9n\u00e9tiques.<br \/><a href=\"https:\/\/ibrain.univ-tours.fr\/\">https:\/\/ibrain.univ-tours.fr\/<\/a><\/li><\/ul><h4>Accompagnement des patients<\/h4><ul><li><strong>ARSLA \u2013 Association pour la recherche sur la SLA<br \/><\/strong>Association d\u00e9di\u00e9e au soutien des patients et au financement de la recherche sur la SLA.<br \/><a href=\"https:\/\/www.arsla.org\/\">https:\/\/www.arsla.org\/<\/a><\/li><\/ul><ul><li><strong>MDPH \u2013 Maison D\u00e9partementale des Personnes Handicap\u00e9es<br \/><\/strong>Informations sur les droits, aides et accompagnements li\u00e9s au handicap.<br \/><a href=\"https:\/\/mdphenligne.cnsa.fr\/\">https:\/\/mdphenligne.cnsa.fr\/<\/a><\/li><\/ul><ul><li><strong>NeuroCentre \u2013 R\u00e9seau neurologique Centre-Val de Loire<br \/><\/strong>R\u00e9seau r\u00e9gional favorisant la coordination des parcours de soins en neurologie.<br \/><a href=\"https:\/\/www.neurocentre.fr\/\">https:\/\/www.neurocentre.fr\/<\/a><\/li><\/ul><h4>Formation<\/h4><ul><li><strong>Dipl\u00f4me Universitaire (DU) Motoneurone<br \/><\/strong>Formation d\u00e9di\u00e9e aux maladies du motoneurone et \u00e0 la SLA.<br \/><a href=\"https:\/\/www.univ-tours.fr\/formations\">https:\/\/www.univ-tours.fr\/formations<\/a><\/li><\/ul><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Face \u00e0 l\u2019\u00e9pid\u00e9mie de coronavirus qui touche la France, les \u00e9quipes de l\u2019ARSLA restent op\u00e9rationnelles pour prot\u00e9ger les malades, les aidants et les informer ! L\u2019\u00e9pid\u00e9mie de COVID-19 actuellement en cours en France impose aux personnes fragiles d\u2019\u00eatre particuli\u00e8rement vigilantes et de prendre de fortes pr\u00e9cautions pour \u00e9viter tout risque de contamination. 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