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{"id":13045,"date":"2024-03-28T10:19:59","date_gmt":"2024-03-28T14:19:59","guid":{"rendered":"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/?p=13045"},"modified":"2024-04-02T11:31:35","modified_gmt":"2024-04-02T15:31:35","slug":"medgen-users-your-feedback","status":"publish","type":"post","link":"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/2024\/03\/28\/medgen-users-your-feedback\/","title":{"rendered":"MedGen Users, We Want Your Feedback!"},"content":{"rendered":"<p><span data-contrast=\"none\">Do you use <\/span><a href=\"https:\/\/www.ncbi.nlm.nih.gov\/medgen?utm_source=ncbi_insights&utm_medium=referral&utm_campaign=medgen-feedback-20240328\"><span data-contrast=\"none\">NCBI\u2019s MedGen<\/span><\/a><span data-contrast=\"none\">? If so, then you probably know it\u2019s NCBI\u2019s one-stop-shop for genetic phenotype information. If you are a healthcare provider, genetic professional, researcher, or anyone who uses MedGen, we want to hear from you to help us make this resource better meet your needs!\u00a0<\/span><span data-ccp-props=\"{"201341983":0,"335559739":0,"335559740":240}\">\u00a0<\/span><\/p>\n<p><strong>We want to know:\u00a0<\/strong><\/p>\n<ul>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"9\" data-list-defn-props=\"{"335552541":1,"335559684":-2,"335559685":720,"335559991":360,"469769226":"Symbol","469769242":[8226],"469777803":"left","469777804":"\uf0b7","469777815":"hybridMultilevel"}\" aria-setsize=\"-1\" data-aria-posinset=\"1\" data-aria-level=\"1\"><span style=\"font-size: 17px;\">How you currently use MedGen\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"9\" data-list-defn-props=\"{"335552541":1,"335559684":-2,"335559685":720,"335559991":360,"469769226":"Symbol","469769242":[8226],"469777803":"left","469777804":"\uf0b7","469777815":"hybridMultilevel"}\" aria-setsize=\"-1\" data-aria-posinset=\"2\" data-aria-level=\"1\"><span style=\"font-size: 17px;\">How we can make MedGen data more useful to you\u00a0<\/span><\/li>\n<\/ul>\n<h5>How to provide feedback<\/h5>\n<p><!--more--><\/p>\n<p>There are <strong>two ways<\/strong> you can provide feedback:<\/p>\n<ol>\n<li data-leveltext=\"%1.\" data-font=\"Calibri\" data-listid=\"8\" data-list-defn-props=\"{"335552541":0,"335559684":-1,"335559685":720,"335559991":360,"469769242":[65533,0],"469777803":"left","469777804":"%1.","469777815":"hybridMultilevel"}\" aria-setsize=\"-1\" data-aria-posinset=\"1\" data-aria-level=\"1\"><span style=\"font-size: 17px;\">Take this short <a href=\"https:\/\/nlmenterprise.co1.qualtrics.com\/jfe\/form\/SV_6oiitV4vRfP8bKS?Q_CHL=si\">online survey<\/a>\u00a0<\/span><\/li>\n<li data-leveltext=\"%1.\" data-font=\"Calibri\" data-listid=\"8\" data-list-defn-props=\"{"335552541":0,"335559684":-1,"335559685":720,"335559991":360,"469769242":[65533,0],"469777803":"left","469777804":"%1.","469777815":"hybridMultilevel"}\" aria-setsize=\"-1\" data-aria-posinset=\"1\" data-aria-level=\"1\"><span style=\"font-size: 17px;\">Contact us at <a href=\"mailto:medgen@ncbi.nlm.nih.gov\">medgen@ncbi.nlm.nih.gov<\/a> to schedule an interview with a MedGen team member\u00a0<\/span><\/li>\n<\/ol>\n<h5>About MedGen<\/h5>\n<ul>\n<li data-leveltext=\"\u00b7\" data-font=\"Symbol\" data-listid=\"6\" data-list-defn-props=\"{"335552541":1,"335559684":-2,"335559685":720,"335559991":360,"469769226":"Symbol","469769242":[8226],"469777803":"left","469777804":"\u00b7","469777815":"hybridMultilevel"}\" aria-setsize=\"-1\" data-aria-posinset=\"3\" data-aria-level=\"1\"><span style=\"font-size: 17px;\">Aggregates information from authoritative sources and provides links to useful, actionable information\u00a0<\/span><\/li>\n<li data-leveltext=\"\u00b7\" data-font=\"Symbol\" data-listid=\"6\" data-list-defn-props=\"{"335552541":1,"335559684":-2,"335559685":720,"335559991":360,"469769226":"Symbol","469769242":[8226],"469777803":"left","469777804":"\u00b7","469777815":"hybridMultilevel"}\" aria-setsize=\"-1\" data-aria-posinset=\"3\" data-aria-level=\"1\"><span style=\"font-size: 17px;\">Links professional practice guidelines to relevant phenotypes, related articles in PubMed and on NCBI’s Bookshelf\u00a0<\/span><\/li>\n<li data-leveltext=\"\u00b7\" data-font=\"Symbol\" data-listid=\"6\" data-list-defn-props=\"{"335552541":1,"335559684":-2,"335559685":720,"335559991":360,"469769226":"Symbol","469769242":[8226],"469777803":"left","469777804":"\u00b7","469777815":"hybridMultilevel"}\" aria-setsize=\"-1\" data-aria-posinset=\"3\" data-aria-level=\"1\"><span style=\"font-size: 17px;\">Standardizes genetic phenotype nomenclature across NCBI resources\u00a0\u00a0<\/span><\/li>\n<li data-leveltext=\"\u00b7\" data-font=\"Symbol\" data-listid=\"6\" data-list-defn-props=\"{"335552541":1,"335559684":-2,"335559685":720,"335559991":360,"469769226":"Symbol","469769242":[8226],"469777803":"left","469777804":"\u00b7","469777815":"hybridMultilevel"}\" aria-setsize=\"-1\" data-aria-posinset=\"3\" data-aria-level=\"1\"><span style=\"font-size: 17px;\">Includes information on infectious diseases (since 2020)\u00a0<\/span><\/li>\n<li data-leveltext=\"\u00b7\" data-font=\"Symbol\" data-listid=\"6\" data-list-defn-props=\"{"335552541":1,"335559684":-2,"335559685":720,"335559991":360,"469769226":"Symbol","469769242":[8226],"469777803":"left","469777804":"\u00b7","469777815":"hybridMultilevel"}\" aria-setsize=\"-1\" data-aria-posinset=\"3\" data-aria-level=\"1\"><span style=\"font-size: 17px;\">Search by clinical features to find disease records\u00a0\u00a0<\/span><\/li>\n<li data-leveltext=\"\u00b7\" data-font=\"Symbol\" data-listid=\"6\" data-list-defn-props=\"{"335552541":1,"335559684":-2,"335559685":720,"335559991":360,"469769226":"Symbol","469769242":[8226],"469777803":"left","469777804":"\u00b7","469777815":"hybridMultilevel"}\" aria-setsize=\"-1\" data-aria-posinset=\"3\" data-aria-level=\"1\"><span style=\"font-size: 17px;\">Provides the phenotypic data and vocabularies used by <a href=\"https:\/\/www.ncbi.nlm.nih.gov\/clinvar\/?utm_source=ncbi_insights&utm_medium=referral&utm_campaign=medgen-feedback-20240328\">ClinVar<\/a> and <a href=\"https:\/\/www.ncbi.nlm.nih.gov\/gtr\/?utm_source=ncbi_insights&utm_medium=referral&utm_campaign=medgen-feedback-20240328\">Genetic Testing Registry (GTR)<\/a>\u00a0<\/span><\/li>\n<\/ul>\n<p><span data-contrast=\"none\">Please note: <\/span><a href=\"https:\/\/ftp.ncbi.nlm.nih.gov\/pub\/medgen\/\"><span data-contrast=\"none\">MedGen data<\/span><\/a><span data-contrast=\"none\"> is available for you to use in your own projects. <\/span><a href=\"mailto:medgen@ncbi.nlm.nih.gov\"><span data-contrast=\"none\">Contact us<\/span><\/a><span data-contrast=\"none\"> if you would like us to help you adopt the MedGen dataset.<\/span><\/p>\n<h5>Stay up to date<\/h5>\n<p><span data-contrast=\"none\">Follow us on social\u202f<\/span><a href=\"https:\/\/twitter.com\/NCBI_Clinical\"><span data-contrast=\"none\">@NCBI_clinical<\/span><\/a> <span data-contrast=\"none\">and join\u202f<\/span><a href=\"https:\/\/public.govdelivery.com\/accounts\/USNLMOCPL\/subscriber\/new?topic_id=USNLMOCPL_52\"><span data-contrast=\"none\">NCBI’s mailing list<\/span><\/a><span data-contrast=\"none\">\u202fto keep up to date with MedGen and other NCBI news.\u202f\u202f <\/span><span data-ccp-props=\"{"201341983":0,"335559739":0,"335559740":240}\">\u00a0<\/span><\/p>\n<h5>Questions?<\/h5>\n<p><span data-contrast=\"none\">Please <\/span><a href=\"mailto:medgen@ncbi.nlm.nih.gov\"><span data-contrast=\"none\">reach out to us<\/span><\/a><span data-contrast=\"none\">\u202fif you have questions or would like to provide feedback.<\/span><span data-ccp-props=\"{"201341983":0,"335559739":0,"335559740":240}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{"201341983":0,"335559739":160,"335559740":259}\">\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Do you use NCBI\u2019s MedGen? If so, then you probably know it\u2019s NCBI\u2019s one-stop-shop for genetic phenotype information. If you are a healthcare provider, genetic professional, researcher, or anyone who uses MedGen, we want to hear from you to help us make this resource better meet your needs!\u00a0\u00a0 We want to know:\u00a0 How you currently … <a href=\"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/2024\/03\/28\/medgen-users-your-feedback\/\" class=\"more-link\">Continue reading <span class=\"screen-reader-text\">MedGen Users, We Want Your Feedback!<\/span> <span class=\"meta-nav\">→<\/span><\/a><\/p>\n","protected":false},"author":42204617,"featured_media":13046,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_coblocks_attr":"","_coblocks_dimensions":"","_coblocks_responsive_height":"","_coblocks_accordion_ie_support":"","jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"MedGen Users, We Want Your Feedback!","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","enabled":false},"version":2}},"categories":[2248],"tags":[108204782,36977864,31926433],"table_tags":[],"class_list":["post-13045","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-whats-new","tag-clinvar","tag-genetic-testing-registry","tag-medgen"],"jetpack_publicize_connections":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v24.6 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>MedGen Users, We Want Your Feedback! - NCBI Insights<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/2024\/03\/28\/medgen-users-your-feedback\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"MedGen Users, We Want Your Feedback! - NCBI Insights\" \/>\n<meta property=\"og:description\" content=\"Do you use NCBI\u2019s MedGen? If so, then you probably know it\u2019s NCBI\u2019s one-stop-shop for genetic phenotype information. If you are a healthcare provider, genetic professional, researcher, or anyone who uses MedGen, we want to hear from you to help us make this resource better meet your needs!\u00a0\u00a0 We want to know:\u00a0 How you currently … Continue reading MedGen Users, We Want Your Feedback! →\" \/>\n<meta property=\"og:url\" content=\"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/2024\/03\/28\/medgen-users-your-feedback\/\" \/>\n<meta property=\"og:site_name\" content=\"NCBI Insights\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/ncbi.nlm\" \/>\n<meta property=\"article:published_time\" content=\"2024-03-28T14:19:59+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-04-02T15:31:35+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/wp-content\/uploads\/2024\/03\/MedGen_Feedback-e1711632539959.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1100\" \/>\n\t<meta property=\"og:image:height\" content=\"575\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"NCBI Staff\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@NCBI\" \/>\n<meta name=\"twitter:site\" content=\"@NCBI\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"NCBI Staff\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/2024\/03\/28\/medgen-users-your-feedback\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/2024\/03\/28\/medgen-users-your-feedback\/\"},\"author\":{\"name\":\"NCBI Staff\",\"@id\":\"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/#\/schema\/person\/4f41ea6a31cea38a9a1b1419c048e50b\"},\"headline\":\"MedGen Users, We Want Your Feedback!\",\"datePublished\":\"2024-03-28T14:19:59+00:00\",\"dateModified\":\"2024-04-02T15:31:35+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/2024\/03\/28\/medgen-users-your-feedback\/\"},\"wordCount\":246,\"commentCount\":0,\"publisher\":{\"@id\":\"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/#organization\"},\"image\":{\"@id\":\"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/2024\/03\/28\/medgen-users-your-feedback\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/i0.wp.com\/ncbiinsights.ncbi.nlm.nih.gov\/wp-content\/uploads\/2024\/03\/MedGen_Feedback-e1711632539959.png?fit=1100%2C575&ssl=1\",\"keywords\":[\"ClinVar\",\"Genetic Testing Registry (GTR)\",\"MedGen\"],\"articleSection\":[\"What's New\"],\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/2024\/03\/28\/medgen-users-your-feedback\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/2024\/03\/28\/medgen-users-your-feedback\/\",\"url\":\"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/2024\/03\/28\/medgen-users-your-feedback\/\",\"name\":\"MedGen Users, We Want Your Feedback! - NCBI Insights\",\"isPartOf\":{\"@id\":\"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/2024\/03\/28\/medgen-users-your-feedback\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/2024\/03\/28\/medgen-users-your-feedback\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/i0.wp.com\/ncbiinsights.ncbi.nlm.nih.gov\/wp-content\/uploads\/2024\/03\/MedGen_Feedback-e1711632539959.png?fit=1100%2C575&ssl=1\",\"datePublished\":\"2024-03-28T14:19:59+00:00\",\"dateModified\":\"2024-04-02T15:31:35+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/2024\/03\/28\/medgen-users-your-feedback\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/2024\/03\/28\/medgen-users-your-feedback\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\/\/ncbiinsights.ncbi.nlm.nih.gov\/2024\/03\/28\/medgen-users-your-feedback\/#primaryimage\",\"url\":\"https:\/\/i0.wp.com\/ncbiinsights.ncbi.nlm.nih.gov\/wp-content\/uploads\/2024\/03\/MedGen_Feedback-e1711632539959.png?fit=1100%2C575&ssl=1\",\"contentUrl\":\"https:\/\/i0.wp.com\/ncbiinsights.ncbi.nlm.nih.gov\/wp-content\/uploads\/2024\/03\/MedGen_Feedback-e1711632539959.png?fit=1100%2C575&ssl=1\",\"width\":1100,\"height\":575,\"caption\":\"Clinician in a white coat with stethoscope and holding a tablet. 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