{"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 “Orphan Diseases” Find Each Other Using Social Media Online & Jump Start Research<\/span><\/h1>\n<p> <\/p>\n<p><span style=\"font-family: 'times new roman', times; font-size: 16px;\">People who have “orphan diseases” (extremely rare diseases) often find that their local MD’s know very little about their disease because they may have never encountered it in their practice.<\/span><\/p>\n<p> <\/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> <\/p>\n<p><span style=\"font-family: 'times new roman', times; font-size: 16px;\">Here’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> <\/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;\">“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;\">…<strong>The rise of social media has allowed patients to do for themselves what researchers like Hayes can’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;\">“<strong>This is not investigator-initiated research, this is patient-initiated research<\/strong>,” Hayes says, “and to\u00a0\u00a0a certain extent has been patient-sustained research in the case of our study.”<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Patients with “Orphan Diseases” Find Each Other Using Social Media Online & Jump Start Research People who have “orphan diseases” (extremely rare diseases) often find that their local MD’s know very little about their disease because they may have never encountered it in their practice. Some patients are taking matters into their own […]<\/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 “Orphan Diseases” Find Each Other Using Social Media Online & Jump Start Research People who have “orphan diseases” (extremely rare diseases) often find that their local MD’s know very little about their disease because they may have never encountered it in their practice. 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