{"id":23189,"date":"2024-09-12T09:30:04","date_gmt":"2024-09-12T13:30:04","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=23189"},"modified":"2024-09-12T11:03:47","modified_gmt":"2024-09-12T15:03:47","slug":"ctclaunchrelease","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/ctclaunchrelease\/","title":{"rendered":"Emily's Entourage, Yetersiz Hizmet Alan KF Toplulu\u011fu i\u00e7in \u00c7\u0131\u011f\u0131r A\u00e7an Tedavileri Te\u015fvik Etmek \u00dczere K\u00fcresel 'KF Klinik Deneme Ba\u011flant\u0131s\u0131n\u0131' Resmi Olarak Ba\u015flat\u0131yor"},"content":{"rendered":"

Yeni, geli\u015ftirilmi\u015f platform, d\u00fcnya \u00e7ap\u0131nda kistik fibrozis hastalar\u0131n\u0131 yeni klinik ara\u015ft\u0131rma f\u0131rsatlar\u0131yla bulu\u015fturarak mevcut CFTR mod\u00fclat\u00f6rleri taraf\u0131ndan hizmet alamayanlar i\u00e7in tedavilerin geli\u015ftirilmesini h\u0131zland\u0131r\u0131yor<\/i><\/p>\n

\"\"

Emily's Entourage CF Clinical Trial Connect, uygun olmayan genetik mutasyonlar, yan etkiler veya mod\u00fclat\u00f6rlere suboptimal yan\u0131tlar nedeniyle mevcut CFTR mod\u00fclat\u00f6r tedavilerinden fayda g\u00f6rmeyen KF'li ki\u015filer i\u00e7in \u00f6zel olarak tasarlanm\u0131\u015ft\u0131r.<\/p><\/div>\n

Lower Merion, PA - 12 Eyl\u00fcl 2024 -<\/strong> Kistik fibrozis (KF) hastalar\u0131n\u0131n son 10%'si i\u00e7in yeni tedaviler ve tedavi ara\u015ft\u0131rmalar\u0131n\u0131 h\u0131zland\u0131ran yenilik\u00e7i bir 501(c)3 kurulu\u015fu olan Emily's Entourage (EE) CF Clinical Trial Connect (CTC)<\/b><\/a>. Ba\u015flang\u0131\u00e7ta EE Hasta Kayd\u0131 olarak ba\u015flat\u0131lan CTC, uygun olmayan genetik mutasyonlar, yan etkiler veya mod\u00fclat\u00f6rlere suboptimal yan\u0131tlar nedeniyle mevcut CFTR mod\u00fclat\u00f6r tedavilerinden yararlanamayan KF'li ki\u015filer i\u00e7in \u00f6zel olarak tasarlanm\u0131\u015f yeni y\u00fckseltilmi\u015f k\u00fcresel bir veritaban\u0131d\u0131r. CTC, bu son derece nadir ve yetersiz hizmet alan grup i\u00e7in hayat kurtar\u0131c\u0131 tedavilerin geli\u015ftirilmesini h\u0131zland\u0131rmak i\u00e7in e\u015fsiz bir f\u0131rsat sunmaktad\u0131r.<\/p>\n

\u00d6nceki EE Registry'nin temelini geni\u015fleten CF Clinical Trial Connect veritaban\u0131, daha da b\u00fcy\u00fck etki sa\u011flamak i\u00e7in y\u00fckseltilmi\u015ftir. K\u00fcresel bir ortak kurulu\u015flar a\u011f\u0131 taraf\u0131ndan desteklenen CTC, CFTR mod\u00fclat\u00f6rlerinden fayda g\u00f6rmeyen ki\u015filerin klinik deneme f\u0131rsatlar\u0131n\u0131 belirlemelerine ve takip etmelerine yard\u0131mc\u0131 olmak i\u00e7in temel bilgiler ve kaynaklar sa\u011flar. CTC, i\u015fe al\u0131m ve kay\u0131t i\u015flemlerini kolayla\u015ft\u0131rarak tedavilerin ke\u015ffedilmesini h\u0131zland\u0131r\u0131r ve nadir hastal\u0131k ila\u00e7 geli\u015ftirmenin kendine \u00f6zg\u00fc zorluklar\u0131n\u0131n ele al\u0131nmas\u0131na yard\u0131mc\u0131 olur.<\/p>\n

Kaydolarak CF Klinik Deneme Ba\u011flant\u0131s\u0131<\/b>KF'li ki\u015filer, KF mutasyonlar\u0131, mikrobiyolojileri, ya\u015flar\u0131 ve konumlar\u0131 da dahil olmak \u00fczere profillerine dayal\u0131 olarak yeni klinik ara\u015ft\u0131rma f\u0131rsatlar\u0131 hakk\u0131nda ilgili bilgilere erken eri\u015fim sa\u011flayacakt\u0131r.<\/p>\n

\u0130\u015flem basittir:<\/strong><\/p>\n

    \n
  1. Bireyler temel demografik ve genetik bilgileri sa\u011flayarak kay\u0131t olurlar.<\/li>\n
  2. \u0130lgili klinik ara\u015ft\u0131rmalar hakk\u0131nda e-posta yoluyla ki\u015fiselle\u015ftirilmi\u015f bildirimler al\u0131rlar ve istedikleri zaman CTC portal\u0131nda EE taraf\u0131ndan desteklenen aktif ara\u015ft\u0131rma f\u0131rsatlar\u0131n\u0131 ke\u015ffedebilirler.<\/li>\n
  3. Kay\u0131t yapt\u0131ranlar, ilgili klinik ara\u015ft\u0131rmalar hakk\u0131nda daha fazla bilgi edinebilir ve bir ara\u015ft\u0131rmaya kat\u0131lmay\u0131 d\u00fc\u015f\u00fcnerek en yeni ara\u015ft\u0131rmalar\u0131n ve ila\u00e7 geli\u015ftirmenin h\u0131zland\u0131r\u0131lmas\u0131na yard\u0131mc\u0131 olabilirler.<\/li>\n<\/ol>\n

    Emily's Entourage'\u0131n kurucu orta\u011f\u0131 Emily Kramer-Golinkoff, MBE, \"Emily's Entourage'da, KF'li insanlar\u0131n kendi sa\u011fl\u0131klar\u0131 konusunda en b\u00fcy\u00fck \u00e7\u0131kara sahip olduklar\u0131na ve klinik ara\u015ft\u0131rma ve bak\u0131m konusunda bilin\u00e7li se\u00e7imler yapmak i\u00e7in kaynaklarla donat\u0131lmalar\u0131 gerekti\u011fine inan\u0131yoruz\" dedi. \"Ayr\u0131ca, CTC arac\u0131l\u0131\u011f\u0131yla son 10% i\u00e7inde iyi koordine edilmi\u015f, aktif bir insan toplulu\u011fu olu\u015fturman\u0131n, bu ultra nadir pop\u00fclasyon i\u00e7in hayat kurtar\u0131c\u0131 tedavileri h\u0131zl\u0131 bir \u015fekilde biti\u015f \u00e7izgisine ula\u015ft\u0131rmak i\u00e7in kritik olaca\u011f\u0131na inan\u0131yoruz - ve bu bizim tek hedefimiz.\"<\/p>\n

    CTC'ye kaydolanlar, yeni klinik ara\u015ft\u0131rma bilgilerine erken eri\u015fim elde ederek, yaln\u0131zca bak\u0131m merkezlerine veya klinisyenlere g\u00fcvenmeden do\u011frudan ara\u015ft\u0131rmalar hakk\u0131nda bilgi edinmelerini sa\u011flar. Bu yakla\u015f\u0131m, klinik deneylere kat\u0131l\u0131m\u0131 h\u0131zland\u0131r\u0131r ve mevcut CFTR mod\u00fclat\u00f6rlerinden fayda g\u00f6rmeyenler i\u00e7in tedavilerin geli\u015ftirilmesine y\u00f6nelik daha h\u0131zl\u0131 ilerleme sa\u011flar.<\/p>\n

    \"CF Clinical Trial Connect'in lansman\u0131, KF ara\u015ft\u0131rmalar\u0131 alan\u0131nda kritik bir and\u0131r. Mevcut CFTR mod\u00fclat\u00f6rlerinden fayda g\u00f6rmeyen KF'li ki\u015fileri en son klinik \u00e7al\u0131\u015fmalara ba\u011flayarak, kritik, kar\u015f\u0131lanmam\u0131\u015f ihtiya\u00e7lar\u0131 olan bir grup i\u00e7in yeni tedavilerin geli\u015ftirilmesini h\u0131zland\u0131r\u0131yoruz,\" diyor Emily's Entourage Ba\u015f Bilim Sorumlusu Chandra Ghose, PhD.<\/p>\n

    CF Clinical Trial Connect, uygun olmayan genetik mutasyonlar\u0131, yan etkileri veya mod\u00fclat\u00f6rlere suboptimal yan\u0131tlar\u0131 olanlar da dahil olmak \u00fczere CFTR mod\u00fclat\u00f6rlerinden yararlanamayan d\u00fcnyan\u0131n d\u00f6rt bir yan\u0131ndan KF'li ki\u015filere a\u00e7\u0131kt\u0131r. Ebeveynler veya vasiler 18 ya\u015f\u0131n alt\u0131ndaki bireyler ad\u0131na kay\u0131t yapt\u0131rabilir.<\/p>\n

    Daha fazla bilgi almak ve CF Clinical Trial Connect'e kaydolmak i\u00e7in \u015fu adresi ziyaret edin www.emilysentourage.org\/ctc<\/a>.<\/p>\n

     <\/p>\n

    Emily'nin \u00c7evresi Hakk\u0131nda<\/b><\/p>\n

    Emily's Entourage, mevcut mutasyon hedefli tedavilerden yararlanamayan kistik fibrozis (KF) pop\u00fclasyonunun son 10%'sindeki bireyler i\u00e7in yeni tedaviler ve bir tedavi i\u00e7in ara\u015ft\u0131rmalar\u0131 h\u0131zland\u0131ran yenilik\u00e7i bir 501(c)3't\u00fcr. Emily's Entourage 2011 y\u0131l\u0131ndan bu yana milyonlarca dolarl\u0131k ara\u015ft\u0131rma hibesi vermi\u015f, \u015fu anda sat\u0131n al\u0131nan bir KF gen terapisi \u015firketini kurmu\u015f, klinik deneylere kat\u0131l\u0131m\u0131 h\u0131zland\u0131rmak i\u00e7in bir hasta veri taban\u0131 ve klinik deney e\u015fle\u015ftirme program\u0131 geli\u015ftirmi\u015f ve d\u00fcnya \u00e7ap\u0131nda y\u00fcksek etkili ara\u015ft\u0131rma ve ila\u00e7 geli\u015ftirme \u00e7abalar\u0131na \u00f6nc\u00fcl\u00fck etmi\u015ftir. Kurulu\u015f, New York Times, STAT, CNN, People ve daha fazlas\u0131 dahil olmak \u00fczere ulusal medyada yer alm\u0131\u015ft\u0131r. Daha fazla bilgi i\u00e7in emilysentourage.org<\/a>.<\/p>\n

    \u00a0<\/i><\/p>\n

    Medya \u0130leti\u015fim<\/b><\/p>\n

    Hannah Kleckner<\/p>\n

    Pazarlama ve \u0130leti\u015fim Direkt\u00f6r\u00fc<\/p>\n

    hannah@emilysentourage.org<\/a><\/p>\n

    \u00a0<\/i><\/p>","protected":false},"excerpt":{"rendered":"

    Yeni, y\u00fckseltilmi\u015f platform, d\u00fcnya \u00e7ap\u0131nda kistik fibrozisli ki\u015fileri yeni klinik ara\u015ft\u0131rma f\u0131rsatlar\u0131yla bulu\u015fturarak mevcut CFTR mod\u00fclat\u00f6rleri taraf\u0131ndan hizmet alamayanlar i\u00e7in tedavilerin geli\u015ftirilmesini h\u0131zland\u0131r\u0131yor Lower Merion, PA - 12 Eyl\u00fcl 2024 - Emily's Entourage (EE), yeni tedaviler i\u00e7in ara\u015ft\u0131rmalar\u0131 h\u0131zland\u0131ran yenilik\u00e7i bir 501(c)3 ve insanlar\u0131n son 10%'si i\u00e7in bir tedavi... <\/p>\n

    <\/div>\n

    Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1719,"featured_media":23228,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"none","_seopress_titles_title":"%%post_title%%","_seopress_titles_desc":"%%post_excerpt%%","_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":[178],"tags":[193,194,7,192,195,111],"class_list":["post-23189","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-press-releases","tag-clinical-trial-connect","tag-ctc","tag-cystic-fibrosis","tag-patient-database","tag-patient-registry","tag-research"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/CF-Clinical-Trial-Connect-Featured-Image1.png","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/23189","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\/1719"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=23189"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/23189\/revisions"}],"predecessor-version":[{"id":23227,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/23189\/revisions\/23227"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/23228"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=23189"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=23189"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=23189"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}