{"id":16768,"date":"2022-03-08T17:30:17","date_gmt":"2022-03-08T22:30:17","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=16768"},"modified":"2022-03-09T09:01:53","modified_gmt":"2022-03-09T14:01:53","slug":"ee-publishes-first-ever-final-10-survey-and-announces-informational-webinar","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/ee-publishes-first-ever-final-10-survey-and-announces-informational-webinar\/","title":{"rendered":"EE \u0130lk Kez \"Nihai 10% Anketi\" Yay\u0131nlad\u0131 ve Bilgilendirme Webinar\u0131n\u0131 Duyurdu"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">Emily's Entourage (EE), onaylanm\u0131\u015f mutasyon hedefli tedavilerden fayda g\u00f6rmeyen kistik fibrozis (KF) hastalar\u0131n\u0131n sa\u011fl\u0131\u011f\u0131 ve bak\u0131\u015f a\u00e7\u0131lar\u0131na ili\u015fkin ilk k\u00fcresel anketinin bu ay hakemli t\u0131p dergisi Pediatric Pulmonology'de yay\u0131nland\u0131\u011f\u0131n\u0131 duyurmaktan memnuniyet duyar.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Kurulu\u015f, EE Scientific Advisor Board \u00fcyesi ve makalenin ortak yazar\u0131 Dr. Jennifer Taylor-Cousar'\u0131n anket bulgular\u0131n\u0131 payla\u015fmak ve toplumdan gelen sorular\u0131 yan\u0131tlamak \u00fczere yapaca\u011f\u0131 sunumun yer alaca\u011f\u0131 bir bilgilendirme webinar\u0131na ev sahipli\u011fi yapacak. Webinar 6 Nisan \u00c7ar\u015famba g\u00fcn\u00fc saat 20:00'de ger\u00e7ekle\u015ftirilecektir.<\/span><\/p>\n<h2><strong>ANKET<\/strong><\/h2>\n<p><span style=\"font-weight: 400;\">Bu anketin amac\u0131, uygun olmayan mutasyonlar, eri\u015fim eksikli\u011fi veya yan etkiler nedeniyle mevcut mutasyon hedefli tedavilerden (CFTR mod\u00fclat\u00f6rleri) yararlanamayan KF toplulu\u011funun son 10%'sinde yer alanlar\u0131n mevcut sa\u011fl\u0131k durumunu, KF'nin etkisini, kar\u015f\u0131lanmam\u0131\u015f ihtiya\u00e7lar\u0131n\u0131 ve klinik ara\u015ft\u0131rma ilgisini daha iyi anlamak i\u00e7in bilgi toplamakt\u0131r.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">EE Kurucu Orta\u011f\u0131 Emily Kramer-Golinkoff, \"Bu sonu\u00e7lar\u0131n, toplumun ihtiya\u00e7lar\u0131n\u0131 kar\u015f\u0131lamak i\u00e7in ila\u00e7 geli\u015ftirme ve klinik ara\u015ft\u0131rma tasar\u0131m\u0131n\u0131 y\u00f6nlendirmeye ve h\u0131zland\u0131rmaya yard\u0131mc\u0131 olabilece\u011fini ve KF toplulu\u011funun sesinin ila\u00e7 geli\u015ftirme ve onay s\u00fcrecinin her ad\u0131m\u0131nda \u00f6n planda ve merkezde kalmas\u0131n\u0131 sa\u011flayabilece\u011fini umuyoruz\" dedi.\u00a0\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Haziran ve Temmuz 2021 tarihleri aras\u0131nda ger\u00e7ekle\u015ftirilen 38 soruluk \u00e7al\u0131\u015fmaya 5 k\u0131tadan 430'dan fazla ki\u015fi kat\u0131ld\u0131 ve sosyal medya ve e-posta yoluyla KF'li bireyler ve ailelerin yan\u0131 s\u0131ra ABD i\u00e7indeki ve d\u0131\u015f\u0131ndaki savunuculuk gruplar\u0131na da\u011f\u0131t\u0131ld\u0131.\u00a0<\/span><\/p>\n<h2><strong>ANKET SONU\u00c7LARINDAN \u00d6NE \u00c7IKAN BA\u015eLIKLAR<\/strong><\/h2>\n<p><strong>Klinik \u00d6zellikler<\/strong><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Kat\u0131l\u0131mc\u0131lar\u0131n yakla\u015f\u0131k 26%'sinde hafif akci\u011fer hastal\u0131\u011f\u0131, 50,3%'sinde orta derecede hastal\u0131k ve 11,1%'sinde a\u011f\u0131r hastal\u0131k vard\u0131\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Kendini BIPOC bir birey olarak tan\u0131mlayan ve mod\u00fclat\u00f6rler i\u00e7in uygun olmayan kat\u0131l\u0131mc\u0131lar\u0131n oran\u0131 (72,5%) kendini Beyaz olarak tan\u0131mlayanlardan (65,2%) daha y\u00fcksektir<\/span><\/li>\n<\/ul>\n<p><strong>Hastal\u0131\u011f\u0131n Etkisi ve Tedavi Y\u00fck\u00fc<\/strong><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">KF'li bireylerin 13,8%'si KF ile ilgili bir sorun nedeniyle y\u0131ll\u0131k bazda hastanede be\u015f veya daha fazla gece ge\u00e7irmi\u015ftir<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Ankete kat\u0131lanlar\u0131n 86,1%'sinden fazlas\u0131 KF'nin kendilerinin veya aile \u00fcyelerinin ya\u015fam\u0131 \u00fczerinde orta ila \u00f6nemli bir etkisi oldu\u011funu bildirirken, bak\u0131m verenlerin 93,5%'si KF'nin g\u00fcnl\u00fck ya\u015fam \u00fczerinde orta ila \u00f6nemli bir etkisi oldu\u011funu bildirmi\u015ftir. Bak\u0131m verenler aras\u0131nda ruhsal (66,7%) ve fiziksel (40,7%) sa\u011fl\u0131k etkileri en y\u00fcksek oranda bildirilmi\u015ftir.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">KF'li bireyler aras\u0131nda, KF'den en \u00e7ok etkilenen ya\u015fam unsurlar\u0131 ruh sa\u011fl\u0131\u011f\u0131 (45,5%), gelece\u011fe y\u00f6nelik planlar (45,2%) ve arkada\u015flarla vakit ge\u00e7irebilme\/sosyal faaliyetlere kat\u0131labilme (39,7%) olmu\u015ftur.<\/span><\/li>\n<\/ul>\n<p><strong>Potansiyel Klinik Ara\u015ft\u0131rma Kat\u0131l\u0131m\u0131<\/strong><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">76.7% gelecekteki klinik ara\u015ft\u0131rmalara kat\u0131lmakla ilgilendi\u011fini ifade etmi\u015ftir<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Klinik ara\u015ft\u0131rmalara kat\u0131lmam\u0131\u015f veya kat\u0131lmayacak olanlar aras\u0131nda en yayg\u0131n neden yeterlilik eksikli\u011fiydi (37,0%)<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">En \u00f6nemli deneme \u00f6zellikleri deneme sona erdikten sonra ilaca eri\u015fim (92,5%) ve daha fazla klinik deneme yerinin eklenmesi (78,7%) olmu\u015ftur.<\/span><\/li>\n<\/ul>\n<p><strong>KF'li Ki\u015filerin T\u00fcm\u00fcn\u00fcn De\u011fil Baz\u0131lar\u0131n\u0131n CFTR Mod\u00fclat\u00f6rlerine Eri\u015fimine \u0130li\u015fkin Alg\u0131lar<\/strong><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Kendileri\/aile \u00fcyeleri mod\u00fclat\u00f6rlerden yararlanamazken KF toplulu\u011fundaki di\u011fer ki\u015filerin yararland\u0131\u011f\u0131n\u0131 g\u00f6rmenin nas\u0131l bir his oldu\u011fu soruldu\u011funda, \u00e7o\u011fu ki\u015fi yararlananlar i\u00e7in mutlu ve heyecanl\u0131 hissetmi\u015ftir, ancak tekrar eden di\u011fer temalar aras\u0131nda \"ac\u0131 tatl\u0131\", \"k\u0131skan\u00e7\", \"\u00fczg\u00fcn\", \"sinir bozucu\", \"hayal k\u0131r\u0131kl\u0131\u011f\u0131\", \"k\u0131zg\u0131n\", \"endi\u015feli\" ve \"geride b\u0131rak\u0131lm\u0131\u015f\" yer alm\u0131\u015ft\u0131r.\u00a0<\/span><\/li>\n<\/ul>\n<p><strong><a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/35170259\/\">Yay\u0131n\u0131n tamam\u0131n\u0131 okuyun.<\/a><\/strong><\/p>\n<p><span style=\"font-weight: 400;\">Makalenin, KF'li bireyler ve aileleri de dahil olmak \u00fczere KF toplulu\u011fundaki herkesin sonu\u00e7lar\u0131 \u00f6\u011frenebilmesini ve bunlardan faydalanabilmesini sa\u011flamak i\u00e7in a\u00e7\u0131k eri\u015fimli oldu\u011funu l\u00fctfen unutmay\u0131n.\u00a0<\/span><\/p>\n<h2><strong>BI\u0307LGI\u0307LENDI\u0307RME WEBI\u0307NARI<\/strong><\/h2>\n<p><span style=\"font-weight: 400;\">EE, Dr. Jennifer Taylor-Cousar'\u0131n temel anket bulgular\u0131na ili\u015fkin sunumunun ard\u0131ndan toplumdan gelen sorular\u0131 yan\u0131tlamak \u00fczere bir Soru-Cevap oturumunun yer alaca\u011f\u0131 bir bilgilendirme webinar\u0131na ev sahipli\u011fi yapacakt\u0131r.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Webinar 6 Nisan \u00c7ar\u015famba g\u00fcn\u00fc saat 20:00'de ET'de ger\u00e7ekle\u015ftirilecek olup \u00fccretsiz ve herkese a\u00e7\u0131kt\u0131r. L\u00fctfen \u00f6nceden kay\u0131t yapt\u0131r\u0131lmas\u0131 gerekti\u011fini unutmay\u0131n.<\/span><\/p>\n<p style=\"text-align: center;\">\n<a class=\"gdlr-button medium without-border\" href=\"https:\/\/us02web.zoom.us\/webinar\/register\/WN_km7yanKZSza8zRQ-g2P2Fw\" target=\"_self\"  style=\"color:#ffffff; background-color:#b055ff; \"  >Webinar i\u00e7in kay\u0131t olun<\/a>\n<\/p>\n<div class=\"gdlr-shortcode-wrapper\"><div class=\"clear\"><\/div><div class=\"gdlr-item gdlr-divider-item\"  ><div class=\"gdlr-divider solid\"  style=\"width: 50%;\" ><\/div><\/div><\/div>\n<div class=\"gdlr-shortcode-wrapper\"><div class=\"gdlr-styled-box-item-ux gdlr-ux\" ><div class=\"gdlr-item gdlr-styled-box-item\" ><div class=\"gdlr-styled-box-head-wrapper\" ><div class=\"gdlr-styled-box-corner\" style=\"border-bottom-color:#b055ff;\" ><\/div><div class=\"gdlr-styled-box-head\" style=\"background-color:#462561;\" ><\/div><\/div><div class=\"gdlr-styled-box-body with-head\" style=\"background-color:#462561; color: #ffffff; \" ><p><strong>Dr. Jennifer Taylor-Cousar ve ankete c\u00f6mert\u00e7e kat\u0131lan KF'li bireyler ve aile \u00fcyeleri de dahil olmak \u00fczere ankete katk\u0131da bulunan herkese ve makale yazarlar\u0131na te\u015fekk\u00fcr ederiz.\u00a0<\/strong><\/p>\n<p><strong><i>Sizde veya aile \u00fcyenizde KF sa\u00e7ma mutasyonunun bir veya iki kopyas\u0131 varsa, EE'nin KF Sa\u00e7ma Mutasyon Hasta Kayd\u0131na kat\u0131lmaya ve sa\u011flad\u0131\u011f\u0131n\u0131z bilgilere dayanarak ilgili ara\u015ft\u0131rmalar, klinik geli\u015fmeler ve ila\u00e7 denemeleri hakk\u0131nda bilgilendirilmeye hak kazan\u0131rs\u0131n\u0131z. <a href=\"https:\/\/www.emilysentourage.org\/tr\/patient-registry\/\">Daha fazla bilgi edinin ve hasta kayd\u0131na kat\u0131l\u0131n.<\/a>\u00a0<\/i><\/strong><\/p>\n<\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"<p>Emily's Entourage (EE), onaylanm\u0131\u015f mutasyon hedefli tedavilerden faydalanamayan kistik fibrozis (KF) hastalar\u0131n\u0131n sa\u011fl\u0131\u011f\u0131 ve bak\u0131\u015f a\u00e7\u0131lar\u0131na ili\u015fkin ilk k\u00fcresel anketinin bu ay hakemli t\u0131p dergisi Pediatric Pulmonology'de yay\u0131nland\u0131\u011f\u0131n\u0131 duyurmaktan memnuniyet duyar.  Kurulu\u015f, EE Scientific'ten bir sunumun yer alaca\u011f\u0131 bir bilgilendirme webinar\u0131na ev sahipli\u011fi yapacak... <\/p>\n<div class=\"clear\"><\/div>\n<p><a href=\"https:\/\/www.emilysentourage.org\/tr\/ee-publishes-first-ever-final-10-survey-and-announces-informational-webinar\/\" class=\"excerpt-read-more\">Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1281,"featured_media":16788,"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-16768","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\/Final-10-Survey-Webinar-Promo-Facebook-Post-1.png","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/16768","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\/1281"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=16768"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/16768\/revisions"}],"predecessor-version":[{"id":16776,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/16768\/revisions\/16776"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/16788"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=16768"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=16768"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=16768"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}