{"id":1836,"date":"2012-06-04T14:58:06","date_gmt":"2012-06-04T22:58:06","guid":{"rendered":"http:\/\/www.nancyrhine.com\/?p=1836"},"modified":"2012-12-18T13:47:26","modified_gmt":"2012-12-18T21:47:26","slug":"patients-with-orphan-diseases-find-each-other-online-jump-start-research","status":"publish","type":"post","link":"https:\/\/www.nancyrhine.com\/2012\/06\/04\/patients-with-orphan-diseases-find-each-other-online-jump-start-research\/","title":{"rendered":"Patients with Rare Diseases Jump-Start Research thru Social Media"},"content":{"rendered":"<h1><\/h1>\n<h1><span style=\"font-family: 'times new roman', times; font-size: 20px;\">Patients with &#8220;Orphan Diseases&#8221; Find Each Other Using Social Media Online &amp; Jump Start Research<\/span><\/h1>\n<p>&nbsp;<\/p>\n<p><span style=\"font-family: 'times new roman', times; font-size: 16px;\">People who have &#8220;orphan diseases&#8221; (extremely rare diseases) often find that their local MD&#8217;s know very little about their disease because they may have never encountered it in their practice.<\/span><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"font-family: 'times new roman', times; font-size: 16px;\"><strong>Some patients are taking matters into their own hands and finding each other online through social media<\/strong> to exchange information, experiences, and even spur researchers to do clinical trials.<\/span><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"font-family: 'times new roman', times; font-size: 16px;\">Here&#8217;s one such success story about a young woman with a rare disease who found 70 other patients with her disease from around the world and inspired an MD (Dr. Sharonne Hayes) at Mayo Clinic to undertake <strong>new clinical trials<\/strong>.\u00a0<\/span><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"font-size: 16px; font-family: 'times new roman', times;\">Listen to the story here on NPR Morning Edition: <strong><a href=\"http:\/\/www.npr.org\/blogs\/health\/2012\/05\/28\/153706146\/patients-find-each-other-online-to-jump-start-medical-research\">Patients Find Each Other Online to Jump-Start Medical Research.<\/a><\/strong><\/span><\/p>\n<p style=\"text-align: left;\"><span style=\"font-family: 'times new roman', times; font-size: 16px;\">\u00a0 \u00a0 \u00a0 \u00a0 <\/span><\/p>\n<p style=\"text-align: left;\"><span style=\"font-family: 'times new roman', times; font-size: 16px;\">Some quotes from the story:<\/span><\/p>\n<p style=\"text-align: left;\">\n<p style=\"text-align: left; padding-left: 60px;\"><span style=\"font-family: 'times new roman', times; font-size: 16px;\">&#8220;Hayes set up a <strong>virtual patient registry<\/strong> and allowed patients from all over the world submit their<\/span><span style=\"font-family: 'times new roman', times; font-size: 16px;\">\u00a0 medical records and scans online. In the first trial, Mayo enrolled 12 patients \u2014 and had to turn people away.<\/span><\/p>\n<p style=\"text-align: left; padding-left: 60px;\">\n<p style=\"text-align: left; padding-left: 60px;\"><span style=\"font-family: 'times new roman', times; font-size: 16px;\">&#8230;<strong>The rise of social media has allowed patients to do for themselves what researchers like Hayes can&#8217;t<\/strong>: spread information about research. <strong>Through their personal Facebook pages, chat rooms and message boards, patients are recruiting each other in a kind of virtual word-of-mouth.<\/strong><\/span><\/p>\n<p style=\"text-align: left; padding-left: 60px;\">\n<p style=\"text-align: left; padding-left: 60px;\"><span style=\"font-family: 'times new roman', times; font-size: 16px;\">&#8220;<strong>This is not investigator-initiated research, this is patient-initiated research<\/strong>,&#8221; Hayes says, &#8220;and to\u00a0\u00a0a certain extent has been patient-sustained research in the case of our study.&#8221;<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Patients with &#8220;Orphan Diseases&#8221; Find Each Other Using Social Media Online &amp; Jump Start Research &nbsp; People who have &#8220;orphan diseases&#8221; (extremely rare diseases) often find that their local MD&#8217;s know very little about their disease because they may have never encountered it in their practice. &nbsp; Some patients are taking matters into their own [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"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":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","enabled":false},"version":2}},"categories":[1],"tags":[125,30,124,121,123,120,122],"class_list":["post-1836","post","type-post","status-publish","format-standard","hentry","category-general","tag-chat-rooms","tag-facebook","tag-message-boards","tag-rare-diseases","tag-scad","tag-social-media","tag-social-media-patient-support-groups"],"jetpack_publicize_connections":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.7 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Patients with Rare Diseases Jump-Start Research thru Social Media - Nancy Rhine, MS, LMFT, CPG<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"http:\/\/www.nancyrhine.com\/2012\/06\/04\/patients-with-orphan-diseases-find-each-other-online-jump-start-research\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Patients with Rare Diseases Jump-Start Research thru Social Media - Nancy Rhine, MS, LMFT, CPG\" \/>\n<meta property=\"og:description\" content=\"Patients with &#8220;Orphan Diseases&#8221; 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