{"id":14791,"date":"2020-09-16T14:30:53","date_gmt":"2020-09-16T18:30:53","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=14791"},"modified":"2020-09-16T14:30:53","modified_gmt":"2020-09-16T18:30:53","slug":"ee-launches-pilot-patient-registry-collaboration-with-translate-bio","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/he\/ee-launches-pilot-patient-registry-collaboration-with-translate-bio\/","title":{"rendered":"EE \u05de\u05e9\u05d9\u05e7\u05d4 \u05e9\u05d9\u05ea\u05d5\u05e3 \u05e4\u05e2\u05d5\u05dc\u05d4 \u05e2\u05dd \u05e8\u05d9\u05e9\u05d5\u05dd \u05d7\u05d5\u05dc\u05d9\u05dd \u05e4\u05d9\u05d9\u05dc\u05d5\u05d8 \u05e2\u05dd Translate Bio"},"content":{"rendered":"<p>\u05d1\u05e1\u05e4\u05d8\u05de\u05d1\u05e8 \u05d4\u05e9\u05d9\u05e7\u05d4 \u05d7\u05d1\u05e8\u05ea Emily&#039;s Entourage (EE) \u05e9\u05d9\u05ea\u05d5\u05e3 \u05e4\u05e2\u05d5\u05dc\u05d4 \u05e8\u05d0\u05e9\u05d5\u05df \u05de\u05e1\u05d5\u05d2\u05d5 \u05e2\u05dd Translate Bio \u05db\u05d3\u05d9 \u05dc\u05d4\u05e4\u05e2\u05d9\u05dc \u05d0\u05ea \u05e8\u05d9\u05e9\u05d5\u05dd \u05d4\u05de\u05d8\u05d5\u05e4\u05dc\u05d9\u05dd \u05d4\u05e0\u05d5\u05e0\u05e1\u05e0\u05e1\u05e0\u05e1\u05e0\u05e1\u05e0\u05e1\u05e0\u05e1\u05e0\u05e1\u05e0\u05e1\u05e0\u05e1\u05e0\u05e1\u05e0\u05e1\u05e0\u05e1\u05e0\u05e1\u05e0\u05e1\u05e0\u05e1\u05e0\u05e1\u05e0\u05e1\u05e0\u05e1\u05e0\u05e1 \u05e9\u05dc \u05d7\u05d5\u05dc\u05d9 \u05e1\u05d9\u05e1\u05d8\u05d9\u05e7 \u05e4\u05d9\u05d1\u05e8\u05d5\u05d6\u05d9\u05e1 (CF) \u05e2\u05dd Translate Bio, \u05db\u05db\u05dc\u05d9 \u05dc\u05d6\u05d9\u05d4\u05d5\u05d9 \u05d5\u05e4\u05e0\u05d9\u05d9\u05d4 \u05dc\u05de\u05d8\u05d5\u05e4\u05dc\u05d9\u05dd \u05d1\u05e0\u05d9\u05e1\u05d5\u05d9\u05d9\u05dd \u05e7\u05dc\u05d9\u05e0\u05d9\u05d9\u05dd. \u05d4\u05de\u05d8\u05e8\u05d4 \u05d4\u05d9\u05d0 \u05dc\u05d7\u05d1\u05e8 \u05d0\u05e0\u05e9\u05d9\u05dd \u05e2\u05dd CF \u05e2\u05dd \u05de\u05d9\u05d3\u05e2 \u05e8\u05dc\u05d5\u05d5\u05e0\u05d8\u05d9 \u05e2\u05dc \u05e0\u05d9\u05e1\u05d5\u05d9\u05d9\u05dd \u05e7\u05dc\u05d9\u05e0\u05d9\u05d9\u05dd \u05d5\u05d4\u05d6\u05d3\u05de\u05e0\u05d5\u05d9\u05d5\u05ea \u05dc\u05d4\u05d0\u05d9\u05e5 \u05d0\u05ea \u05ea\u05d4\u05dc\u05d9\u05da \u05e4\u05d9\u05ea\u05d5\u05d7 \u05d4\u05ea\u05e8\u05d5\u05e4\u05d4 \u05e2\u05dc \u05d9\u05d3\u05d9 \u05d4\u05e4\u05d9\u05db\u05ea \u05d2\u05d9\u05d5\u05e1 \u05e0\u05d9\u05e1\u05d5\u05d9\u05d9\u05dd \u05e7\u05dc\u05d9\u05e0\u05d9\u05d9\u05dd \u05dc\u05de\u05de\u05d5\u05e7\u05d3 \u05d5\u05d9\u05e2\u05d9\u05dc \u05d9\u05d5\u05ea\u05e8, \u05de\u05d4 \u05e9\u05d9\u05d5\u05d1\u05d9\u05dc \u05d1\u05e1\u05d5\u05e4\u05d5 \u05e9\u05dc \u05d3\u05d1\u05e8 \u05dc\u05e4\u05d9\u05ea\u05d5\u05d7 \u05de\u05d4\u05d9\u05e8 \u05d9\u05d5\u05ea\u05e8 \u05e9\u05dc \u05d8\u05d9\u05e4\u05d5\u05dc\u05d9\u05dd \u05de\u05e6\u05d9\u05dc\u05d9 \u05d7\u05d9\u05d9\u05dd.<\/p>\n<blockquote>\n<p style=\"text-align: center;\"><em><strong>&quot;\u05d0\u05e0\u05d5 \u05e0\u05e8\u05d2\u05e9\u05d9\u05dd \u05dc\u05e9\u05ea\u05e3 \u05e4\u05e2\u05d5\u05dc\u05d4 \u05e2\u05dd EE \u05d5\u05d0\u05e0\u05d5 \u05de\u05d0\u05de\u05d9\u05e0\u05d9\u05dd \u05e9\u05de\u05e8\u05e9\u05dd \u05d4\u05de\u05d8\u05d5\u05e4\u05dc\u05d9\u05dd \u05d9\u05d4\u05d5\u05d5\u05d4 \u05de\u05e8\u05db\u05d9\u05d1 \u05d7\u05e9\u05d5\u05d1 \u05d1\u05d0\u05e1\u05d8\u05e8\u05d8\u05d2\u05d9\u05d9\u05ea \u05d4\u05d4\u05e8\u05e9\u05de\u05d4 \u05dc-MRT5005 \u05e9\u05dc\u05e0\u05d5 \u05db\u05db\u05dc \u05e9\u05d0\u05e0\u05d5 \u05de\u05ea\u05e7\u05d3\u05de\u05d9\u05dd \u05d1\u05e4\u05d9\u05ea\u05d5\u05d7 \u05e7\u05dc\u05d9\u05e0\u05d9.&quot;<br \/>\n<\/strong><\/em><em><strong>~ \u05d3&quot;\u05e8 \u05d0\u05df \u05d1\u05e8\u05d1\u05d9\u05d9\u05e8, \u05e7\u05e6\u05d9\u05e0\u05ea \u05e8\u05e4\u05d5\u05d0\u05d4 \u05e8\u05d0\u05e9\u05d9\u05ea, \u05ea\u05e8\u05d2\u05dd \u05d1\u05d9\u05d5<\/strong><\/em><\/p>\n<\/blockquote>\n<div id=\"attachment_14794\" style=\"width: 910px\" class=\"wp-caption aligncenter\"><img fetchpriority=\"high\" decoding=\"async\" aria-describedby=\"caption-attachment-14794\" class=\"wp-image-14794 size-full\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Tran519370_web.jpg\" alt=\"\" width=\"900\" height=\"563\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Tran519370_web.jpg 900w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Tran519370_web-300x188.jpg 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Tran519370_web-768x480.jpg 768w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Tran519370_web-600x375.jpg 600w\" sizes=\"(max-width: 900px) 100vw, 900px\" \/><p id=\"caption-attachment-14794\" class=\"wp-caption-text\">\u05d0\u05de\u05d9\u05dc\u05d9 \u05d5\u05dc\u05d9\u05d6\u05d4 \u05de\u05e1\u05d9\u05d9\u05e8\u05d5\u05ea \u05d1\u05de\u05e2\u05d1\u05d3\u05d4 \u05d1\u05de\u05d4\u05dc\u05da \u05d1\u05d9\u05e7\u05d5\u05e8 \u05d1-Translate Bio \u05d1-2019.<\/p><\/div>\n<p>&quot;\u05d1\u05e2\u05d5\u05d3 \u05e9\u05d4\u05d9\u05d9\u05ea\u05d4 \u05d4\u05ea\u05e7\u05d3\u05de\u05d5\u05ea \u05de\u05e9\u05de\u05e2\u05d5\u05ea\u05d9\u05ea \u05d1\u05d8\u05d9\u05e4\u05d5\u05dc \u05d1-CF, \u05e0\u05d5\u05ea\u05e8 \u05e6\u05d5\u05e8\u05da \u05de\u05e9\u05de\u05e2\u05d5\u05ea\u05d9 \u05e9\u05dc\u05d0 \u05e0\u05e2\u05e0\u05d4. \u05d1\u05e2\u05e8\u05da 10 \u05d0\u05d7\u05d5\u05d6\u05d9\u05dd \u05de\u05d0\u05d5\u05db\u05dc\u05d5\u05e1\u05d9\u05d9\u05ea \u05d4-CF \u05dc\u05d0 \u05e6\u05e4\u05d5\u05d9\u05d9\u05dd \u05dc\u05d9\u05d4\u05e0\u05d5\u05ea \u05de\u05de\u05d5\u05e4\u05e0\u05d9 CFTR \u05d4\u05de\u05d0\u05d5\u05e9\u05e8\u05d9\u05dd \u05db\u05e2\u05ea&quot;, \u05d0\u05de\u05e8\u05d4 \u05d3&quot;\u05e8 \u05d0\u05df \u05d1\u05e8\u05d1\u05d9\u05d9\u05e8, \u05e7\u05e6\u05d9\u05e0\u05ea \u05e8\u05e4\u05d5\u05d0\u05d4 \u05e8\u05d0\u05e9\u05d9\u05ea, Translate Bio. &quot;MRT5005, \u05d4\u05de\u05d5\u05e2\u05de\u05d3 \u05d4\u05e8\u05d0\u05e9\u05d5\u05df \u05dc\u05de\u05d5\u05e6\u05e8 mRNA \u05d1\u05e9\u05dc\u05d1 \u05d4\u05e7\u05dc\u05d9\u05e0\u05d9 \u05e9\u05dc Translate Bio, \u05d9\u05e9 \u05e4\u05d5\u05d8\u05e0\u05e6\u05d9\u05d0\u05dc \u05dc\u05d8\u05e4\u05dc \u05d1\u05db\u05dc \u05d4\u05d0\u05e0\u05e9\u05d9\u05dd \u05e2\u05dd CF, \u05db\u05d5\u05dc\u05dc \u05d0\u05dc\u05d4 \u05e2\u05dd \u05de\u05d5\u05d8\u05e6\u05d9\u05d5\u05ea \u05e9\u05d8\u05d5\u05d9\u05d5\u05ea. \u05d0\u05e0\u05d5 \u05e9\u05de\u05d7\u05d9\u05dd \u05dc\u05e9\u05ea\u05e3 \u05e4\u05e2\u05d5\u05dc\u05d4 \u05e2\u05dd EE \u05d5\u05d0\u05e0\u05d5 \u05de\u05d0\u05de\u05d9\u05e0\u05d9\u05dd \u05e9\u05de\u05e8\u05e9\u05dd \u05d4\u05de\u05d8\u05d5\u05e4\u05dc\u05d9\u05dd \u05d9\u05d4\u05d5\u05d5\u05d4 \u05de\u05e8\u05db\u05d9\u05d1 \u05d7\u05e9\u05d5\u05d1 \u05d1\u05d0\u05e1\u05d8\u05e8\u05d8\u05d2\u05d9\u05d9\u05ea \u05d4\u05d4\u05e8\u05e9\u05de\u05d4 \u05e9\u05dc\u05e0\u05d5 \u05dc-MRT5005 \u05db\u05db\u05dc \u05e9\u05d0\u05e0\u05d5 \u05de\u05ea\u05e7\u05d3\u05de\u05d9\u05dd \u05d1\u05e4\u05d9\u05ea\u05d5\u05d7 \u05e7\u05dc\u05d9\u05e0\u05d9.&quot;<\/p>\n<p>\u05d4\u05e8\u05d9\u05e9\u05d5\u05dd \u05e9\u05dc EE \u05de\u05d5\u05e8\u05db\u05d1 \u05de\u05d0\u05e0\u05e9\u05d9\u05dd \u05e2\u05dd \u05e2\u05d5\u05ea\u05e7 \u05d0\u05d7\u05d3 \u05d0\u05d5 \u05e9\u05e0\u05d9\u05d9\u05dd \u05e9\u05dc \u05de\u05d5\u05d8\u05e6\u05d9\u05d4 \u05e9\u05d8\u05d5\u05ea\u05d9\u05ea \u05e9\u05dc CF. \u05d4\u05d5\u05d0 \u05db\u05d5\u05dc\u05dc \u05de\u05d0\u05d5\u05ea \u05d0\u05e0\u05e9\u05d9\u05dd \u05de-42 \u05de\u05d3\u05d9\u05e0\u05d5\u05ea \u05d5\u05d9\u05d5\u05ea\u05e8 \u05de-33 \u05de\u05d3\u05d9\u05e0\u05d5\u05ea \u05d1\u05e8\u05d7\u05d1\u05d9 \u05d4\u05e2\u05d5\u05dc\u05dd, \u05d1\u05d2\u05d9\u05dc\u05d0\u05d9\u05dd 1 \u05e2\u05d3 67. \u05d4\u05e8\u05d9\u05e9\u05d5\u05dd \u05de\u05d0\u05e4\u05e9\u05e8 \u05dc\u05d0\u05e0\u05e9\u05d9\u05dd \u05e2\u05dd CF \u05dc\u05dc\u05de\u05d5\u05d3 \u05e2\u05dc \u05de\u05d7\u05e7\u05e8\u05d9\u05dd \u05e8\u05dc\u05d5\u05d5\u05e0\u05d8\u05d9\u05d9\u05dd, \u05d4\u05ea\u05e7\u05d3\u05de\u05d5\u05ea \u05e7\u05dc\u05d9\u05e0\u05d9\u05ea \u05d5\u05e0\u05d9\u05e1\u05d5\u05d9\u05d9 \u05ea\u05e8\u05d5\u05e4\u05d5\u05ea, \u05d5\u05dc\u05d6\u05e8\u05d6 \u05d0\u05ea \u05d4\u05e4\u05d9\u05ea\u05d5\u05d7 \u05e9\u05dc \u05d8\u05d9\u05e4\u05d5\u05dc\u05d9\u05dd \u05de\u05e6\u05d9\u05dc\u05d9 \u05d7\u05d9\u05d9\u05dd.<\/p>\n<div id=\"attachment_14798\" style=\"width: 910px\" class=\"wp-caption aligncenter\"><img decoding=\"async\" aria-describedby=\"caption-attachment-14798\" class=\"wp-image-14798 size-full\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Tran519080-web.jpg\" alt=\"\" width=\"900\" height=\"563\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Tran519080-web.jpg 900w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Tran519080-web-300x188.jpg 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Tran519080-web-768x480.jpg 768w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Tran519080-web-600x375.jpg 600w\" sizes=\"(max-width: 900px) 100vw, 900px\" \/><p id=\"caption-attachment-14798\" class=\"wp-caption-text\">\u05d0\u05de\u05d9\u05dc\u05d9 \u05d1\u05e4\u05d0\u05e0\u05dc \u05dc\u05d0\u05d9\u05e8\u05d5\u05e2 \u05d7\u05d5\u05d3\u05e9 \u05d4\u05de\u05d5\u05d3\u05e2\u05d5\u05ea \u05dc-CF \u05e9\u05dc Translate Bio \u05d1\u05e9\u05e0\u05ea 2019<\/p><\/div>\n<p>\u05d7\u05e9\u05d5\u05d1 \u05dc\u05e6\u05d9\u05d9\u05df \u05e9\u05e4\u05e8\u05d8\u05d9\u05d5\u05ea \u05d4\u05e0\u05e8\u05e9\u05de\u05d9\u05dd \u05d4\u05d9\u05d0 \u05d1\u05e2\u05dc\u05ea \u05d7\u05e9\u05d9\u05d1\u05d5\u05ea \u05e2\u05dc\u05d9\u05d5\u05e0\u05d4 \u05dc-EE. \u05de\u05d9\u05d3\u05e2 \u05d0\u05d9\u05e9\u05d9 \u05d0\u05d9\u05e0\u05d3\u05d9\u05d1\u05d9\u05d3\u05d5\u05d0\u05dc\u05d9 \u05dc\u05e2\u05d5\u05dc\u05dd \u05d0\u05d9\u05e0\u05d5 \u05e0\u05de\u05db\u05e8 \u05d0\u05d5 \u05de\u05e9\u05d5\u05ea\u05e3 \u05e2\u05dd \u05d7\u05d1\u05e8\u05d5\u05ea \u05d0\u05d5 \u05db\u05dc \u05de\u05d5\u05e1\u05d3\u05d5\u05ea \u05d7\u05d9\u05e6\u05d5\u05e0\u05d9\u05d9\u05dd.<\/p>\n<p>EE \u05e0\u05e8\u05d2\u05e9\u05ea \u05dc\u05d4\u05e8\u05d7\u05d9\u05d1 \u05d0\u05ea \u05d4\u05e2\u05e8\u05da \u05e9\u05dc \u05d4\u05d0\u05e8\u05d2\u05d5\u05df \u05dc\u05e7\u05d4\u05d9\u05dc\u05ea \u05d4-CF \u05d5\u05dc\u05d7\u05d1\u05e8\u05d5\u05ea \u05d1\u05d9\u05d5\u05d8\u05db\u05e0\u05d5\u05dc\u05d5\u05d2\u05d9\u05d4, \u05d5\u05d4\u05d9\u05d0 \u05e9\u05de\u05d7\u05d4 \u05d1\u05de\u05d9\u05d5\u05d7\u05d3 \u05dc\u05e2\u05e9\u05d5\u05ea \u05d6\u05d0\u05ea \u05e2\u05dd Translate Bio!<\/p>\n<p style=\"text-align: left;\"><a href=\"https:\/\/www.emilysentourage.org\/he\/patient-registry\/\" target=\"_blank\" rel=\"noopener noreferrer\">\u05d4\u05e6\u05d8\u05e8\u05e3 \u05dc\u05e8\u05d9\u05e9\u05d5\u05dd \u05d7\u05d5\u05dc\u05d9 CF Nonsense Mutation \u05e9\u05dc EE &gt;&gt;<\/a><\/p>\n<p style=\"text-align: left;\"><a href=\"https:\/\/www.emilysentourage.org\/he\/contact-us\/\" target=\"_blank\" rel=\"noopener noreferrer\"><span style=\"font-weight: 400;\">\u05dc\u05e9\u05d0\u05dc\u05d5\u05ea \u05d0\u05d5 \u05de\u05d9\u05d3\u05e2 \u05e0\u05d5\u05e1\u05e3 \u05e2\u05dc \u05e9\u05d9\u05ea\u05d5\u05e3 \u05e4\u05e2\u05d5\u05dc\u05d4 \u05e2\u05dd \u05e8\u05d9\u05e9\u05d5\u05dd \u05d4\u05de\u05d5\u05d8\u05e6\u05d9\u05d5\u05ea \u05d4\u05e0\u05d5\u05e0\u05e1\u05e0\u05e1 \u05e9\u05dc EE CF, \u05d0\u05e0\u05d0 \u05e9\u05dc\u05d7 \u05db\u05d0\u05df &gt;&gt;<\/span><\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>In September, Emily\u2019s Entourage (EE) launched a first-of-its-kind collaboration with Translate Bio to pilot its Cystic Fibrosis (CF) Nonsense Mutation Patient Registry as a tool for clinical trial patient identification and outreach. The goal is to connect individuals with CF with relevant clinical trial information and opportunities to speed the drug development process by making&#8230; <\/p>\n<div class=\"clear\"><\/div>\n<p><a href=\"https:\/\/www.emilysentourage.org\/he\/ee-launches-pilot-patient-registry-collaboration-with-translate-bio\/\" class=\"excerpt-read-more\">\u05e7\u05e8\u05d0 \u05e2\u05d5\u05d3<\/a><\/p>","protected":false},"author":1704,"featured_media":14794,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"none","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-14791","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Tran519370_web.jpg","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/he\/wp-json\/wp\/v2\/posts\/14791","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.emilysentourage.org\/he\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.emilysentourage.org\/he\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/he\/wp-json\/wp\/v2\/users\/1704"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/he\/wp-json\/wp\/v2\/comments?post=14791"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/he\/wp-json\/wp\/v2\/posts\/14791\/revisions"}],"predecessor-version":[{"id":14821,"href":"https:\/\/www.emilysentourage.org\/he\/wp-json\/wp\/v2\/posts\/14791\/revisions\/14821"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/he\/wp-json\/wp\/v2\/media\/14794"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/he\/wp-json\/wp\/v2\/media?parent=14791"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/he\/wp-json\/wp\/v2\/categories?post=14791"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/he\/wp-json\/wp\/v2\/tags?post=14791"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}