{"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\/tr\/ee-launches-pilot-patient-registry-collaboration-with-translate-bio\/","title":{"rendered":"EE, Translate Bio ile Pilot Hasta Kay\u0131t \u0130\u015fbirli\u011fini Ba\u015flatt\u0131"},"content":{"rendered":"<p>Emily's Entourage (EE), Eyl\u00fcl ay\u0131nda Translate Bio ile Kistik Fibrozis (KF) Nonsense Mutasyon Hasta Kay\u0131t Defteri'ni klinik ara\u015ft\u0131rma hastalar\u0131n\u0131n belirlenmesi ve sosyal yard\u0131m i\u00e7in bir ara\u00e7 olarak pilot olarak kullanmak \u00fczere t\u00fcr\u00fcn\u00fcn ilk \u00f6rne\u011fi olan bir i\u015fbirli\u011fi ba\u015flatt\u0131. Ama\u00e7, KF'li bireyleri ilgili klinik ara\u015ft\u0131rma bilgileri ve f\u0131rsatlar\u0131yla bulu\u015fturarak, klinik ara\u015ft\u0131rma i\u015fe al\u0131m\u0131n\u0131 daha hedefli ve verimli hale getirerek ila\u00e7 geli\u015ftirme s\u00fcrecini h\u0131zland\u0131rmak ve sonu\u00e7ta hayat kurtaran tedavilerin daha h\u0131zl\u0131 geli\u015ftirilmesini sa\u011flamakt\u0131r.<\/p>\n<blockquote>\n<p style=\"text-align: center;\"><em><strong>\"EE ile ortakl\u0131k yapmaktan heyecan duyuyoruz ve klinik geli\u015fimde ilerlerken hasta kayd\u0131n\u0131n MRT5005 kay\u0131t stratejimizin \u00f6nemli bir bile\u015feni olaca\u011f\u0131na inan\u0131yoruz.\"<br \/>\n<\/strong><\/em><em><strong>~ Dr. Ann Barbier, Ba\u015f T\u0131bbi Sorumlu, Translate Bio<\/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\">Emily ve Liza 2019 y\u0131l\u0131nda Translate Bio'ya yapt\u0131klar\u0131 ziyaret s\u0131ras\u0131nda laboratuvar\u0131 geziyor.<\/p><\/div>\n<p>\"KF tedavisinde \u00f6nemli ilerlemeler kaydedilmi\u015f olsa da, kar\u015f\u0131lanmam\u0131\u015f \u00f6nemli bir ihtiya\u00e7 devam etmektedir. KF pop\u00fclasyonunun yakla\u015f\u0131k y\u00fczde 10'unun \u015fu anda onaylanm\u0131\u015f CFTR mod\u00fclat\u00f6rlerinden fayda g\u00f6rmesi beklenmiyor,\" diyor Translate Bio Ba\u015f T\u0131bbi Sorumlusu Dr. Ann Barbier. \"Translate Bio'nun ilk klinik a\u015fama mRNA \u00fcr\u00fcn aday\u0131 olan MRT5005, nonsense mutasyonlar\u0131 olanlar da dahil olmak \u00fczere t\u00fcm KF'li insanlar\u0131 tedavi etme potansiyeline sahiptir. EE ile ortakl\u0131k yapmaktan heyecan duyuyoruz ve klinik geli\u015fimde ilerlerken hasta kayd\u0131n\u0131n MRT5005 kay\u0131t stratejimizin \u00f6nemli bir bile\u015feni olaca\u011f\u0131na inan\u0131yoruz.\"<\/p>\n<p>EE'nin kay\u0131t defteri, KF'nin nonsense mutasyonunun bir veya iki kopyas\u0131na sahip bireylerden olu\u015fmaktad\u0131r. Kay\u0131tta 42 eyaletten ve d\u00fcnya \u00e7ap\u0131nda 33'ten fazla \u00fclkeden ya\u015flar\u0131 1 ila 67 aras\u0131nda de\u011fi\u015fen y\u00fczlerce birey yer almaktad\u0131r. Kay\u0131t, KF'li bireylerin ilgili ara\u015ft\u0131rmalar, klinik geli\u015fmeler ve ila\u00e7 denemeleri hakk\u0131nda bilgi edinmesine ve hayat kurtaran tedavilerin geli\u015ftirilmesini h\u0131zland\u0131rmas\u0131na olanak tan\u0131r.<\/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\">Emily, 2019'da Translate Bio'nun KF Fark\u0131ndal\u0131k Ay\u0131 Etkinli\u011fi i\u00e7in bir panelde<\/p><\/div>\n<p>Kay\u0131t yapt\u0131ranlar\u0131n gizlili\u011finin EE i\u00e7in son derece \u00f6nemli oldu\u011funu belirtmek son derece \u00f6nemlidir. Bireysel ki\u015fisel bilgiler asla sat\u0131lmaz veya \u015firketlerle ya da herhangi bir d\u0131\u015f kurumla payla\u015f\u0131lmaz.<\/p>\n<p>EE, kurulu\u015fun KF toplulu\u011fu ve biyoteknoloji \u015firketleri i\u00e7in de\u011ferini art\u0131rmaktan heyecan duyuyor ve bunu Translate Bio ile yapmaktan \u00f6zellikle memnun!<\/p>\n<p style=\"text-align: left;\"><a href=\"https:\/\/www.emilysentourage.org\/tr\/patient-registry\/\" target=\"_blank\" rel=\"noopener noreferrer\">EE'nin KF Nonsense Mutasyonu Hasta kayd\u0131na kat\u0131l\u0131n &gt;&gt;<\/a><\/p>\n<p style=\"text-align: left;\"><a href=\"https:\/\/www.emilysentourage.org\/tr\/contact-us\/\" target=\"_blank\" rel=\"noopener noreferrer\"><span style=\"font-weight: 400;\">EE CF Nonsense Mutation Registry ile ortakl\u0131k hakk\u0131nda sorular\u0131n\u0131z veya daha fazla bilgi i\u00e7in l\u00fctfen buradan g\u00f6nderin &gt;&gt;<\/span><\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>Emily's Entourage (EE), Eyl\u00fcl ay\u0131nda Translate Bio ile Kistik Fibrozis (KF) Nonsense Mutasyon Hasta Kay\u0131t Defteri'ni klinik \u00e7al\u0131\u015fma hastalar\u0131n\u0131n belirlenmesi ve sosyal yard\u0131m i\u00e7in bir ara\u00e7 olarak pilot olarak kullanmak \u00fczere t\u00fcr\u00fcn\u00fcn ilk \u00f6rne\u011fi olan bir i\u015fbirli\u011fi ba\u015flatt\u0131. Ama\u00e7, KF'li bireyleri ilgili klinik ara\u015ft\u0131rma bilgileri ve f\u0131rsatlar\u0131yla bulu\u015fturarak ila\u00e7 geli\u015ftirme s\u00fcrecini h\u0131zland\u0131rmak... <\/p>\n<div class=\"clear\"><\/div>\n<p><a href=\"https:\/\/www.emilysentourage.org\/tr\/ee-launches-pilot-patient-registry-collaboration-with-translate-bio\/\" class=\"excerpt-read-more\">Daha fazla bilgi edinin<\/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":"","_seopress_analysis_target_kw":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_feature_clip_id":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\/tr\/wp-json\/wp\/v2\/posts\/14791","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/users\/1704"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=14791"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/14791\/revisions"}],"predecessor-version":[{"id":14821,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/14791\/revisions\/14821"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/14794"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=14791"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=14791"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=14791"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}