{"id":39964,"date":"2023-08-15T16:11:20","date_gmt":"2023-08-15T20:11:20","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/2023\/08\/15\/nouveaux-rapports-trimestriels-aout-2023\/"},"modified":"2024-01-29T10:01:53","modified_gmt":"2024-01-29T15:01:53","slug":"nouveaux-rapports-trimestriels-aout-2023","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/fr\/2023\/08\/15\/nouveaux-rapports-trimestriels-aout-2023\/","title":{"rendered":"Nouveaux rapports trimestriels &#8211; ao\u00fbt 2023"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">? <\/span>Gr\u00e2ce \u00e0 des participants comme VOUS, nous avons publi\u00e9 de nouveaux rapports trimestriels contenant des informations actualis\u00e9es sur 38 communaut\u00e9s g\u00e9n\u00e9tiques, dont 7 nouveaux groupes (PPP3CA, MEF2C, DYNC1H1, ANKRD11, CHD2, CUL3 et SETD5) dans <span class=\"notranslate\">Simons Searchlight<\/span>. F\u00e9licitations \u00e0 ces nouvelles communaut\u00e9s &#8211; il s&#8217;agit d&#8217;une \u00e9tape importante.<\/p>\n<p>Nous adressons nos f\u00e9licitations \u00e0 toutes les communaut\u00e9s g\u00e9n\u00e9tiques. Votre soutien continu et vos efforts de sensibilisation ont permis d&#8217;\u00e9largir la collecte de donn\u00e9es standardis\u00e9es de haute qualit\u00e9 dans vos communaut\u00e9s respectives. Nous sommes honor\u00e9s de faire partie de ce voyage avec vous. En partageant vos exp\u00e9riences dans le cadre d&#8217;enqu\u00eates et d&#8217;entretiens t\u00e9l\u00e9phoniques, vous permettez des d\u00e9couvertes qui aident de nombreuses familles.<\/p>\n<h3><strong>Consultez votre rapport \u27a1\ufe0f <a href=\"http:\/\/bit.ly\/Genes_We_Study\" target=\"_blank\" rel=\"noopener\">bit.ly\/Genes_We_Study<\/a><\/strong><\/h3>\n<p>Pour les groupes \u00e9ligibles*, le  <span style=\"font-weight: 400;\">Le dernier rapport analyse \u00e9galement les courbes de croissance bas\u00e9es sur l&#8217;enqu\u00eate Vineland Adaptive Behavior Scales (Vineland-3). Le Vineland-3 mesure le d\u00e9veloppement de chaque personne en mati\u00e8re de communication, d&#8217;autonomie, d&#8217;aptitudes sociales et, chez les jeunes enfants, d&#8217;aptitudes motrices. Les donn\u00e9es de ce rapport montrent les comp\u00e9tences \u00e0 diff\u00e9rents \u00e2ges et aident les m\u00e9decins et les chercheurs \u00e0 comprendre comment ces comp\u00e9tences \u00e9voluent dans le temps.  <\/span><\/p>\n<p><strong>Pour aider les familles \u00e0 comprendre ces tableaux, nous avons cr\u00e9\u00e9 cette vid\u00e9o explicative :<\/strong><\/p>\n<iframe loading=\"lazy\" title=\"Lecteur vid\u00e9o YouTube\" src=\"https:\/\/www.youtube.com\/embed\/r24CMnS93rA?si=3_bHuU5zQUcO3YXx\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<p><span style=\"font-weight: 400;\">*<span style=\"text-decoration: underline;\">Important<\/span>: comme nous pr\u00e9sentons des donn\u00e9es individuelles dans ce rapport, nous partageons l&#8217;attention sp\u00e9ciale avec les groupes de 10 membres ou plus qui ont fourni des donn\u00e9es Vineland-3. Encouragez votre communaut\u00e9 \u00e0 r\u00e9pondre \u00e0 l&#8217;enqu\u00eate Vineland d\u00e8s aujourd&#8217;hui afin qu&#8217;elle soit incluse dans les prochains rapports.  <\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Le dernier rapport contient des informations actualis\u00e9es sur 37 communaut\u00e9s g\u00e9n\u00e9tiques.<\/p>\n","protected":false},"author":18,"featured_media":39588,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[195],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts\/39964"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/users\/18"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/comments?post=39964"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts\/39964\/revisions"}],"predecessor-version":[{"id":39973,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts\/39964\/revisions\/39973"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/media\/39588"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/media?parent=39964"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/categories?post=39964"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/tags?post=39964"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}