{"id":45465,"date":"2024-06-01T10:39:58","date_gmt":"2024-06-01T14:39:58","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/2024\/04\/01\/aider-la-recherche-sur-les-maladies-rares-avec-les-crid\/"},"modified":"2025-02-14T11:43:50","modified_gmt":"2025-02-14T16:43:50","slug":"aider-la-recherche-sur-les-maladies-rares-avec-les-crid","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/fr\/2024\/06\/01\/aider-la-recherche-sur-les-maladies-rares-avec-les-crid\/","title":{"rendered":"Aider la recherche sur les maladies rares avec les CRID"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">La capacit\u00e9 de relier les donn\u00e9es des participants \u00e0 partir de sources multiples est essentielle pour travailler ensemble sur les maladies rares. Les CRID (Clinical Research IDs) sont un outil permettant d&#8217;\u00e9tablir ce lien. Les m\u00e9decins, les scientifiques et les patients peuvent ainsi partager et acc\u00e9der aux informations de mani\u00e8re centralis\u00e9e afin de collaborer efficacement au sein d&#8217;une \u00e9quipe.  <\/span><\/p>\n<p><strong>La cr\u00e9ation d&#8217;un CRID pour vous-m\u00eame ou un membre de votre famille est simple. Il suffit de suivre les \u00e9tapes suivantes :<\/strong><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Aller \u00e0 <\/span><a href=\"http:\/\/thecrid.org\" target=\"_blank\" rel=\"noopener\"><br \/>\n  <span style=\"font-weight: 400;\">TheCRID.org<\/span><br \/>\n<\/a><span style=\"font-weight: 400;\"> et cr\u00e9ez librement un identifiant unique en utilisant 8 lettres ou chiffres (mais pas 1, 0, I, O ou L).<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Une fois enregistr\u00e9, vous pouvez partager votre CRID avec des prestataires de soins m\u00e9dicaux ou des \u00e9tudes de recherche comme <span class=\"notranslate\">Simons Searchlight<\/span> (voir ci-dessous).<\/span><\/li>\n<\/ul>\n<p><strong>Si vous faites partie de <span class=\"notranslate\">Simons Searchlight<\/span>, il est \u00e9galement facile d&#8217;ajouter votre CRID optionnel. Il suffit de suivre les \u00e9tapes suivantes :<\/strong><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Connectez-vous \u00e0 votre compte <span class=\"notranslate\">Simons Searchlight<\/span> \u00e0 l&#8217;adresse suivante <\/span><a href=\"https:\/\/bit.ly\/Simons_Searchlight_Dashboard\" target=\"_blank\" rel=\"noopener\"><br \/>\n  <span style=\"font-weight: 400;\">SimonsSearchlight.org<\/span><br \/>\n<\/a><span style=\"font-weight: 400;\">.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Choisissez le CRID du membre de la famille que vous souhaitez ajouter.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Cliquez sur l&#8217;onglet &#8220;Param\u00e8tres du compte&#8221; sur le c\u00f4t\u00e9 gauche de la page.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Faites d\u00e9filer vers le bas jusqu&#8217;\u00e0 &#8220;Autres param\u00e8tres&#8221; et tapez votre CRID dans le champ CRID. Cliquez ensuite sur enregistrer.<\/span><\/li>\n<\/ul>\n<p><strong>Pour contribuer \u00e0 la sensibilisation, veuillez t\u00e9l\u00e9charger le <a href=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/04\/01064542\/How-to-share-CRID-with-Simons-Searchlight.png\" target=\"_blank\" rel=\"noopener\">graphique<\/a> et le <a href=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/04\/01064540\/How-to-share-CRID-with-Simons-Searchlight.pdf\" target=\"_blank\" rel=\"noopener\">PDF<\/a>.<\/strong><\/p>\n<div id=\"attachment_49950\" style=\"width: 1034px\" class=\"wp-caption alignnone\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-49950\" class=\"wp-image-49950 size-large\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/04\/10073111\/How-to-share-CRID-graphic-1-1-1024x576.png\" alt=\"\" width=\"1024\" height=\"576\" srcset=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/04\/10073111\/How-to-share-CRID-graphic-1-1-1024x576.png 1024w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/04\/10073111\/How-to-share-CRID-graphic-1-1-300x169.png 300w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/04\/10073111\/How-to-share-CRID-graphic-1-1-768x432.png 768w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/04\/10073111\/How-to-share-CRID-graphic-1-1-1536x864.png 1536w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/04\/10073111\/How-to-share-CRID-graphic-1-1.png 1920w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><p id=\"caption-attachment-49950\" class=\"wp-caption-text\"><em>Comment partager votre CRID avec <span class=\"notranslate\">Simons Searchlight<\/span> ?<\/em><\/p><\/div>\n<p><span style=\"font-weight: 400;\">Merci de partager votre CRID avec <span class=\"notranslate\">Simons Searchlight<\/span>. Les CRID ont un impact consid\u00e9rable sur la mani\u00e8re dont nous \u00e9tudions les maladies rares en nous rassemblant, en centralisant l&#8217;acc\u00e8s \u00e0 l&#8217;information et en donnant aux patients les moyens d&#8217;agir.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Pour toute question, veuillez envoyer un courriel \u00e0 nos coordinateurs d&#8217;\u00e9tude \u00e0 l&#8217;adresse suivante <\/span><a href=\"mailto:Coordinator@SimonsSearchlight.org\"><br \/>\n  <span style=\"font-weight: 400;\">Coordinator@SimonsSearchlight.org<\/span><br \/>\n<\/a><span style=\"font-weight: 400;\">.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Apprenez \u00e0 cr\u00e9er et \u00e0 ajouter votre CRID \u00e0 votre tableau de bord.<\/p>\n","protected":false},"author":18,"featured_media":45470,"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":[194],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts\/45465"}],"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=45465"}],"version-history":[{"count":7,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts\/45465\/revisions"}],"predecessor-version":[{"id":59622,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts\/45465\/revisions\/59622"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/media\/45470"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/media?parent=45465"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/categories?post=45465"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/tags?post=45465"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}