{"id":45456,"date":"2024-06-01T10:39:58","date_gmt":"2024-06-01T14:39:58","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?p=45456"},"modified":"2025-02-14T11:43:28","modified_gmt":"2025-02-14T16:43:28","slug":"helping-rare-disease-research-with-crids","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/2024\/06\/01\/helping-rare-disease-research-with-crids\/","title":{"rendered":"Helping Rare Disease Research with CRIDs"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">The ability to connect participant data across multiple sources is crucial for working together on rare diseases. CRIDs (Clinical Research IDs) are a tool to make this connection. They give individuals in research a unique universal ID, making it simpler for doctors, scientists, and patients to centrally share and access information to collaborate effectively as a team.\u00a0<\/span><\/p>\n<p><strong>Creating a CRID for yourself or a family member is simple. Just follow these steps:<\/strong><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Go to <\/span><a href=\"http:\/\/thecrid.org\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">TheCRID.org<\/span><\/a><span style=\"font-weight: 400;\"> and freely make a unique identifier using 8 letters or numbers (but not 1, 0, I, O, or L).<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Once you&#8217;re registered, you can share your CRID with medical providers or research studies like <span class=\"notranslate\">Simons Searchlight<\/span> (learn more below).<\/span><\/li>\n<\/ul>\n<p><strong>If you&#8217;re part of <span class=\"notranslate\">Simons Searchlight<\/span>, adding your optional CRID is easy too. Just follow these steps:<\/strong><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Log into your <span class=\"notranslate\">Simons Searchlight<\/span> account at <\/span><a href=\"https:\/\/bit.ly\/Simons_Searchlight_Dashboard\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">SimonsSearchlight.org<\/span><\/a><span style=\"font-weight: 400;\">.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Choose which family member&#8217;s CRID you want to add.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Click on the &#8220;Account Settings&#8221; tab on the left side of the page.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Scroll down to &#8220;Other Settings&#8221; and type your CRID in the CRID field. Then click save.<\/span><\/li>\n<\/ul>\n<p><strong>To help spread awareness, please download the <a href=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/04\/01064542\/How-to-share-CRID-with-Simons-Searchlight.png\" target=\"_blank\" rel=\"noopener\">graphic<\/a> and <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>How to share your CRID with <span class=\"notranslate\">Simons Searchlight<\/span><\/em><\/p><\/div>\n<p><span style=\"font-weight: 400;\">Thank you for sharing your CRID with <span class=\"notranslate\">Simons Searchlight<\/span>. CRIDs are making a big impact on how we study rare diseases by bringing us together, making information more centrally accessible, and empowering patients.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Please email our Study Coordinators with any questions at <\/span><a href=\"mailto:Coordinator@SimonsSearchlight.org\"><span style=\"font-weight: 400;\">Coordinator@SimonsSearchlight.org<\/span><\/a><span style=\"font-weight: 400;\">.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Learn how to create and add your CRID to your dashboard.<\/p>\n","protected":false},"author":18,"featured_media":15430,"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":[18],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/45456"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/users\/18"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=45456"}],"version-history":[{"count":9,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/45456\/revisions"}],"predecessor-version":[{"id":59617,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/45456\/revisions\/59617"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media\/15430"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=45456"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/categories?post=45456"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/tags?post=45456"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}