{"id":3,"date":"2024-06-26T16:01:10","date_gmt":"2024-06-26T16:01:10","guid":{"rendered":"http:\/\/remeds.org\/?page_id=3"},"modified":"2025-07-09T11:18:15","modified_gmt":"2025-07-09T09:18:15","slug":"privacy-policy","status":"publish","type":"page","link":"https:\/\/remeds.org\/tr\/privacy-policy\/","title":{"rendered":"Gizlilik Politikas\u0131"},"content":{"rendered":"<div data-elementor-type=\"wp-page\" data-elementor-id=\"3\" class=\"elementor elementor-3\" data-elementor-post-type=\"page\">\n\t\t\t\t<div class=\"elementor-element elementor-element-53b44b08 e-flex e-con-boxed e-con e-parent\" data-id=\"53b44b08\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-1c206a4 elementor-widget elementor-widget-heading\" data-id=\"1c206a4\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h1 class=\"elementor-heading-title elementor-size-default\">Gizlilik Politikas\u0131<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-74479f5 elementor-widget__width-initial elementor-widget elementor-widget-text-editor\" data-id=\"74479f5\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p><strong>MDS Hastalar\u0131n\u0131n Ebeveynleri ve Yasal Vasileri i\u00e7in Bilgi <\/strong><strong>MECP2 Duplikasyon Sendromu Hasta Kay\u0131t ve Anket Platformu (REMEDS Platformu)<\/strong>\u00a0<strong>ve Gizlilik Bildirimi<\/strong><br \/><strong>Y\u00fcr\u00fcrl\u00fck Tarihi: 30.04.2025<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>Say\u0131n Ebeveynler, Yasal Vasiler ve MDS Hastalar\u0131,\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>\u00c7ocu\u011funuza veya velayetiniz alt\u0131ndaki bireye (bundan sonra \u201c\u00e7ocuk\u201d olarak an\u0131lacakt\u0131r) MECP2 Duplikasyon Sendromu (MDS) tan\u0131s\u0131 konulmu\u015ftur. MDS \u00e7ok nadir g\u00f6r\u00fclen bir hastal\u0131kt\u0131r ve hastadan hastaya de\u011fi\u015febilen farkl\u0131 klinik semptomlarla ortaya \u00e7\u0131kabilir. Bu farkl\u0131l\u0131\u011f\u0131n nedeni net olarak bilinmemekte olup, esas olarak genetik bulgular aras\u0131ndaki farkl\u0131l\u0131klara y\u00f6nelik daha fazla ara\u015ft\u0131rmaya ihtiya\u00e7 vard\u0131r.\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>Klinik belirtilerin genetik varyasyonlarla daha iyi e\u015fle\u015ftirilmesi ve MDS hakk\u0131nda bilgi birikiminin art\u0131r\u0131lmas\u0131 i\u00e7in, nadir hastal\u0131klar\u0131n bir kay\u0131t sisteminde (veritaban\u0131) belgelenmesi \u00f6nemlidir. Bu nedenle REMEDS Platformu kurulmu\u015ftur.\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>\u00c7ocu\u011funuzun verilerinin REMEDS Platformu kay\u0131t sistemine girilmesi, \u00e7ocu\u011funuzun tedavi s\u00fcrecini veya takip bak\u0131m\u0131n\u0131 etkilemez. Ek olarak herhangi bir tedavi, ila\u00e7 ya da test uygulanmayacakt\u0131r. Sizin ya da \u00e7ocu\u011funuzun kimli\u011finin tespit edilememesi i\u00e7in gerekli \u00f6zen g\u00f6sterilmektedir.\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>\u00c7ocu\u011funuzun verilerinin REMEDS Platformu kay\u0131t sistemine girilebilmesi i\u00e7in ebeveyn ya da yasal vasi olarak sizin onay\u0131n\u0131z gerekmektedir. Onay\u0131n\u0131z olmadan \u00e7ocu\u011funuzun verileri toplanamaz. Onay\u0131n\u0131z\u0131 istedi\u011finiz zaman, bak\u0131m veya tedavi \u00fczerinde hi\u00e7bir etkisi olmadan geri \u00e7ekebilirsiniz.\u00a0\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>L\u00fctfen a\u015fa\u011f\u0131daki metni, \u00e7ocu\u011funuzun tedavisinden sorumlu doktorla yapaca\u011f\u0131n\u0131z olas\u0131 bir g\u00f6r\u00fc\u015fmeye ek olarak dikkatlice okuyun ve soru sormaktan \u00e7ekinmeyin. L\u00fctfen sadece a\u015fa\u011f\u0131daki durumlarda onay veriniz:\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li>her \u015feyi tam olarak anlad\u0131n\u0131z;\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li>\u00e7ocu\u011funuzun kay\u0131t sistemine kat\u0131l\u0131m\u0131na onay vermek istiyorsan\u0131z; ve\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li>\u00e7ocu\u011funuzun bu kayitta bi\u0307r katilimci olarak sahi\u0307p oldu\u011fu haklarin farkindasiniz.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:paragraph --><\/p>\n<p><strong>1. REMEDS Platformunun amac\u0131 nedir?<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p class=\"translation-block\">REMEDS Platformu, Avusturya hukukuna g\u00f6re kurulmu\u015f, k\u00e2r amac\u0131 g\u00fctmeyen bir dernek olan <strong>Verein zur Unterst\u00fctzung von Kindern mit MeCP2 Duplikation Syndrom, kurz: Lasst uns MDS heilen<\/strong> <strong>(DupMECP2 \u2013 Lasst uns MDS heilen)<\/strong> taraf\u0131ndan i\u015fletilmektedir ve Avusturya, Linz'de bulunan Kepler Universit\u00e4tsklinikum <strong>(Kepler \u00dcniversitesi Hastanesi) taraf\u0131ndan desteklenmektedir.<\/strong><\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>REMEDS Platformu\u2019nun amac\u0131, Avusturya i\u00e7inden veya d\u0131\u015f\u0131ndan MDS hastalar\u0131n\u0131n klinik ve t\u0131bbi verilerini \u2014 genetik bulgular dahil olmak \u00fczere \u2014 aileye \u00f6zg\u00fc konularla birlikte k\u00fcresel bir veritaban\u0131nda toplamak, saklamak ve analiz etmektir. Bu \u00e7al\u0131\u015fmalar\u0131n amac\u0131, bilimsel ara\u015ft\u0131rmay\u0131 desteklemek, klinik anlay\u0131\u015f\u0131 geli\u015ftirmek ve MDS\u2019nin tedavilerini iyile\u015ftirmektir.\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>MDS hastas\u0131n\u0131n REMEDS Platformuna kaydedilmesi, ilgili taraflar\u0131n veri sunabilmesini sa\u011flar.\u00a0\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>2. REMEDS platformu i\u00e7in kay\u0131t nas\u0131l yap\u0131l\u0131r?<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>REMEDS Platformunda bir kullan\u0131c\u0131 hesab\u0131 olu\u015fturduktan sonra, MECP2 Duplikasyon Sendromlu bir hastay\u0131 kaydedebilirsiniz. Bunun i\u00e7in sizden hastaya dair bilgiler (hastan\u0131n ad\u0131, do\u011fum tarihi, cinsiyeti, uyru\u011fu, ikamet etti\u011fi \u00fclke, hastan\u0131n vefat etmi\u015f olup olmad\u0131\u011f\u0131, hastan\u0131n genetik raporunun y\u00fcklenmesi, bilgilendirme i\u00e7in e-posta adresi, kullan\u0131c\u0131n\u0131n, bak\u0131c\u0131n\u0131n\/yasal vasinin verileri y\u00fcklemeye yetkili oldu\u011funa dair onay) talep edilir. Bu bilgiler, hastan\u0131n REMEDS kay\u0131t sistemine giri\u015f i\u00e7in uygunlu\u011funu kan\u0131tlamak amac\u0131yla al\u0131n\u0131r.\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>Hasta kay\u0131t talebinin g\u00f6nderilmesinin ard\u0131ndan, bir REMEDS doktoru taraf\u0131ndan onay s\u00fcreci ba\u015flar. Onay s\u00fcreci en fazla 90 takvim g\u00fcn\u00fc s\u00fcrer. 90 g\u00fcn sonunda, hizmet sa\u011flay\u0131c\u0131 JotForm arac\u0131l\u0131\u011f\u0131yla toplanan veriler otomatik olarak silinir (REMEDS doktoru hastan\u0131n kay\u0131t talebini onaylad\u0131ktan veya reddettikten sonra verileri manuel olarak silmemi\u015fse). \u0130nceleme s\u00fcrecinde REMEDS doktorlar\u0131 sa\u011flanan verilere g\u00fcvenli eri\u015fime sahip olacakt\u0131r. Bir hastan\u0131n onaylanmas\u0131n\u0131n ard\u0131ndan, hastaya REMEDS Platformu arac\u0131l\u0131\u011f\u0131yla kat\u0131laca\u011f\u0131 t\u00fcm sonraki \u00e7al\u0131\u015fmalarda kullan\u0131lacak bir kimlik numaras\u0131 atan\u0131r.\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>Y\u00fcklenen genetik rapor, onay s\u00fcrecinin tamamlanmas\u0131n\u0131n ard\u0131ndan silinecektir. Hasta kay\u0131t s\u00fcrecinde verilen ki\u015fisel veriler (cinsiyet, uyruk, ikamet edilen \u00fclke ve do\u011fum tarihi), istatistiksel ama\u00e7larla kullan\u0131lmak \u00fczere REMEDS Platformu taraf\u0131ndan otomatik olarak anonimle\u015ftirilir. \u00c7ocu\u011funuzun ad\u0131 ve kay\u0131t durumu (ancak herhangi bir hassas sa\u011fl\u0131k verisi de\u011fil), yaln\u0131zca sizin kendi panelinizde ve platformun i\u015fletiminden sorumlu REMEDS Platform y\u00f6neticisine g\u00f6r\u00fcn\u00fcr olacakt\u0131r.\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>Bir MDS hastas\u0131 onayland\u0131\u011f\u0131nda, panelinizde mevcut devam eden \u00e7al\u0131\u015fmalar\u0131n listelendi\u011fi bir b\u00f6l\u00fcm g\u00f6r\u00fcnecektir. <strong>Ancak, herhangi bir \u00f6zel (klinik) \u00e7al\u0131\u015fmaya kat\u0131l\u0131m i\u00e7in ayr\u0131 onay formlar\u0131, hasta bilgilendirmesi ve gizlilik belgeleri gerekecektir.<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>3. REMEDS platformuna kaydolman\u0131n faydalar\u0131 nelerdir?<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>\u00c7ocu\u011funuzun REMEDS Platformuna kat\u0131l\u0131m\u0131ndan do\u011frudan bir sa\u011fl\u0131k faydas\u0131 elde etmesi beklenmemektedir.\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>4. Herhangi bir risk, \u015fikayet veya yan etki var m\u0131?<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>Hay\u0131r, \u00e7\u00fcnk\u00fc yaln\u0131zca veri toplanmaktad\u0131r.\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>5. REMEDS Platformunda kat\u0131l\u0131m\u0131n veya kayd\u0131n sonland\u0131r\u0131lmas\u0131<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>Kat\u0131l\u0131m, herhangi bir gerek\u00e7e g\u00f6stermeden istenilen zamanda sonland\u0131r\u0131labilir.\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>6. Kat\u0131l\u0131mc\u0131lar i\u00e7in herhangi bir maliyet var m\u0131?<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>REMEDS Platformuna kat\u0131l\u0131m herhangi bir ek maliyet gerektirmez ve verilerin girilmesi i\u00e7in herhangi bir geri \u00f6deme yap\u0131lmaz.\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>7. Daha fazla soru sorma imkan\u0131<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>REMEDS Platformu ile ilgili t\u00fcm sorular\u0131n\u0131z i\u00e7in \u015fu ki\u015filerle ileti\u015fime ge\u00e7ebilirsiniz: <strong>David Covini, DupMECP2 \u2013 Lasst uns MDS heilen Ba\u015fkan\u0131\n\nCaroline Covini, DupMECP2 \u2013 Lasst uns MDS heilen Ba\u015fkan Yard\u0131mc\u0131s\u0131<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>Premreinergasse 13\u00a0\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>1130 Viyana, Avusturya\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>E-posta: <a href=\"mailto:office@remeds.org\" target=\"_blank\" rel=\"noreferrer noopener\">office@remeds.org<\/a>\u00a0\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>8. Genel Veri Koruma Y\u00f6netmeli\u011fi (GDPR) Madde 13 uyar\u0131nca Gizlilik Bilgisi<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>REMEDS Platformu\u2019nun amac\u0131, Avusturya\u2019dan veya d\u00fcnyan\u0131n di\u011fer \u00fclkelerinden MDS\u2019li bireylerin klinik ve t\u0131bbi verilerini toplamak, saklamak ve analiz etmektir. Buna, MDS\u2019li bireyler ve ailelerinden elde edilen verilerin toplanmas\u0131,  takma ad verilmesi veya anonimle\u015ftirilmesi dahildir. Ama\u00e7, bilimsel ara\u015ft\u0131rmay\u0131 desteklemek, klinik anlay\u0131\u015f\u0131 geli\u015ftirmek ve MDS i\u00e7in tedavi se\u00e7eneklerini iyile\u015ftirmektir.\u00a0\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>MDS hastalar\u0131ndan, bak\u0131c\u0131lardan ve yasal vasilerden toplanan ki\u015fisel verilerin gizlili\u011fini ve g\u00fcvenli\u011fini korumay\u0131 taahh\u00fct ediyoruz. Bu Gizlilik Bilgisi, ki\u015fisel verilerin Genel Veri Koruma Y\u00f6netmeli\u011fi (GDPR) ve di\u011fer uygulanabilir veri koruma yasalar\u0131na uygun \u015fekilde nas\u0131l topland\u0131\u011f\u0131n\u0131, i\u015flendi\u011fini ve sakland\u0131\u011f\u0131n\u0131 a\u00e7\u0131klamaktad\u0131r.\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>REMEDS Platformu kullan\u0131c\u0131lar\u0131, kat\u0131lmak istedikleri her bir \u00e7al\u0131\u015fma i\u00e7in ayr\u0131 bir bilgilendirilmi\u015f onam yoluyla veri toplanmas\u0131na ve i\u015flenmesine onay vermelidir.\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>A\u015fa\u011f\u0131daki ayr\u0131m yap\u0131lmal\u0131d\u0131r:\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:list {\"ordered\":true,\"start\":1} --><\/p>\n<ol start=\"1\">\n<li style=\"list-style-type: none;\">\n<ol start=\"1\"><!-- wp:list-item --><\/ol>\n<\/li>\n<\/ol>\n<ol start=\"1\">\n<li style=\"list-style-type: none;\">\n<ol start=\"1\">\n<li><strong>Ki\u015fisel veriler<\/strong>: Bir ki\u015finin do\u011frudan kimli\u011finin tespit edilebildi\u011fi veriler (\u00f6r. ad, do\u011fum tarihi, adres, sosyal g\u00fcvenlik numaras\u0131, foto\u011fraflar vb.).\u00a0<\/li>\n<\/ol>\n<\/li>\n<\/ol>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list {\"ordered\":true,\"start\":2} --><\/p>\n<ol start=\"2\">\n<li style=\"list-style-type: none;\">\n<ol start=\"2\"><!-- wp:list-item --><\/ol>\n<\/li>\n<\/ol>\n<ol start=\"2\">\n<li style=\"list-style-type: none;\">\n<ol start=\"2\">\n<li><strong>Takma ad verilmi\u015f ki\u015fisel veriler (ps\u00f6d\u00f6nimle\u015ftirilmi\u015f veriler)<\/strong>: Ki\u015finin do\u011frudan kimli\u011finin belirlenmesini sa\u011flayan t\u00fcm bilgilerin kald\u0131r\u0131ld\u0131\u011f\u0131, bir kod (\u00f6r. numara) ile de\u011fi\u015ftirildi\u011fi veya bulan\u0131kla\u015ft\u0131r\u0131ld\u0131\u011f\u0131 (\u00f6r. foto\u011fraflarda y\u00fcz\u00fcn bulan\u0131kla\u015ft\u0131r\u0131lmas\u0131) veriler.\u00a0\u00a0<\/li>\n<\/ol>\n<\/li>\n<\/ol>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list {\"ordered\":true,\"start\":3} --><\/p>\n<ol start=\"3\">\n<li style=\"list-style-type: none;\">\n<ol start=\"3\"><!-- wp:list-item --><\/ol>\n<\/li>\n<\/ol>\n<ol start=\"3\">\n<li style=\"list-style-type: none;\">\n<ol start=\"3\">\n<li><strong>Anonimle\u015ftirilmi\u015f veriler<\/strong>: Verilerin belirli bir ki\u015fiyle ili\u015fkilendirilme ihtimalinin tamamen ortadan kald\u0131r\u0131ld\u0131\u011f\u0131 veriler.\u00a0<\/li>\n<\/ol>\n<\/li>\n<\/ol>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:paragraph --><\/p>\n<p><strong>8.1. Verilerinizin i\u015flenmesinden kim sorumludur?\u00a0<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>Veri Sorumlusu:<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>\"Verein zur Unterst\u00fctzung von Kindern mit MeCP2 Duplikation Syndrom, kurz: Lasst uns MDS heilen\nZVR-Zahl (Avusturya merkezi dernek sicil numaras\u0131): 1165516180\"\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>\u0130leti\u015fim:\nDavid Covini, DupMECP2 \u2013 Lasst uns MDS heilen Ba\u015fkan\u0131\nCaroline Covini, DupMECP2 \u2013 Lasst uns MDS heilen Ba\u015fkan Yard\u0131mc\u0131s\u0131<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>Premreinergasse 13, 1130 Viyana, Avusturya\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>E-posta: <a href=\"mailto:office@remeds.org\" target=\"_blank\" rel=\"noreferrer noopener\">office@remeds.org<\/a>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>8.2. Veri toplaman\u0131n amac\u0131<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>Ki\u015fisel verileri \u015fu ama\u00e7larla topluyor ve i\u015fliyoruz:\nA) REMEDS Platformunda bir kullan\u0131c\u0131 hesab\u0131 olu\u015fturmak,\nB) MDS hastas\u0131n\u0131n REMEDS Platformuna kayd\u0131n\u0131 yapmak,\nC) Anketler ve \u00e7al\u0131\u015fmalar i\u00e7in,\nD) Bilimsel ara\u015ft\u0131rmalar ve yay\u0131nlar i\u00e7in ve denek olarak kat\u0131l\u0131nabilecek \u00e7al\u0131\u015fmalar \u00f6nermek amac\u0131yla.<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li>Sadece MECP2 Duplikasyon Sendromu (MDS) olan hasta verilerinin veritaban\u0131na d\u00e2hil edildi\u011fini do\u011frulamak,\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li>MDS\u2019nin anla\u015f\u0131lmas\u0131n\u0131 ve tedavisini geli\u015ftirmek,\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li>MDS ve ilgili sendromlar ile bunlar\u0131n tedavisine y\u00f6nelik ara\u015ft\u0131rmalar\u0131 ilerletmek.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:paragraph --><\/p>\n<p>Veriler, epilepsi ile s\u0131n\u0131rl\u0131 olmaks\u0131z\u0131n, t\u00fcm ara\u015ft\u0131rma sorular\u0131 i\u00e7in kullan\u0131labilecektir. \u00d6rne\u011fin, belirli hastal\u0131klar\u0131n nedenlerini (\u00f6rn. kalp hastal\u0131klar\u0131, kanser veya psikiyatrik bozukluklar) ara\u015ft\u0131rmak ya da yeni bilimsel y\u00f6ntemler geli\u015ftirmek i\u00e7in.\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>8.3. A\u015fa\u011f\u0131daki ama\u00e7larla toplad\u0131\u011f\u0131m\u0131z veriler<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>A\u015fa\u011f\u0131daki ki\u015fisel verileri \u015fu ama\u00e7larla toplayabiliriz:\u00a0\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>A. REMEDS Platformunda hesap olu\u015fturmak i\u00e7in<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li><strong>Kullan\u0131c\u0131ya (bak\u0131c\u0131, yasal vasi) ait ki\u015fisel bilgiler:<\/strong>:  E-posta adresi, Kullan\u0131c\u0131 ID\u2019si, ad, soyad, do\u011fum tarihi.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:paragraph --><\/p>\n<p><strong>B. REMEDS Platformuna kay\u0131t i\u00e7in<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li><strong>Ki\u015fisel Bilgiler<\/strong>: Hastan\u0131n ad\u0131, do\u011fum tarihi, uyru\u011fu, ikamet etti\u011fi \u00fclke, hastan\u0131n vefat edip etmedi\u011fi, kullan\u0131c\u0131n\u0131n verileri y\u00fcklemeye yetkili oldu\u011funa dair onay.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li><strong>T\u0131bbi Veriler<\/strong>: Genetik rapor.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li><strong>Kayd\u0131 yapan ki\u015fiye (bak\u0131c\u0131, yasal vasi) ait ki\u015fisel bilgiler<\/strong>:  E-posta adresi, Kullan\u0131c\u0131 ID\u2019si, ad, soyad, do\u011fum tarihi.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:paragraph --><\/p>\n<p><strong>C. Anketler ve \u00e7al\u0131\u015fmalar i\u00e7in<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li>T\u0131bbi ge\u00e7mi\u015f, semptomlar, tedaviler, tan\u0131 tarihi, tan\u0131n\u0131n konuldu\u011fu yer<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li>Klinik veriler.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:paragraph --><\/p>\n<p class=\"translation-block\"><strong>D. Bilimsel ara\u015ft\u0131rmalar ve yay\u0131nlar ile denek olarak kat\u0131l\u0131nabilecek \u00e7al\u0131\u015fmalar \u00f6nermek i\u00e7in<\/strong><\/p>\n<p><!-- \/wp:paragraph --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li>T\u0131bbi ge\u00e7mi\u015f, semptomlar, tedaviler, tan\u0131 tarihi, tan\u0131n\u0131n konuldu\u011fu yer.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li>Bilimsel ara\u015ft\u0131rma i\u00e7in kullan\u0131lan takma isimli\/anonimle\u015ftirilmi\u015f klinik veriler.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:paragraph --><\/p>\n<p>Takma ad verilmemi\u015f veya anonimle\u015ftirilmemi\u015f olarak elde edilen verilere takma ad verilecek (ps\u00f6d\u00f6nimle\u015ftirilecek) veya anonimle\u015ftirilecektir.\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>REMEDS Platformu\u2019nun ama\u00e7lar\u0131 do\u011frultusunda yaln\u0131zca gerekli ki\u015fisel veriler toplanmaktad\u0131r.\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>8.4. Verilerinizi nas\u0131l i\u015fliyoruz<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li><strong>Veri \u015eifreleme<\/strong>: Ki\u015fisel veriler \u015fifrelenir ve g\u00fcvenli bir \u015fekilde saklan\u0131r.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li><strong>Takma Ad verme (Ps\u00f6d\u00f6nimle\u015ftirme)\/Anonimle\u015ftirme<\/strong>Ara\u015ft\u0131rma kullan\u0131m\u0131 \u00f6ncesinde tan\u0131mlay\u0131c\u0131 veriler bir kod ile de\u011fi\u015ftirilir. Kod, Kepler \u00dcniversitesi Hastanesinde g\u00f6revli bir REMEDS doktoru ve BT i\u015flerinden sorumlu REMEDS Platformu y\u00f6neticisi taraf\u0131ndan saklan\u0131r. Ama\u00e7lar\u0131 yerine getirmek i\u00e7in anonimle\u015ftirme yeterli oldu\u011funda, tan\u0131mlay\u0131c\u0131 veriler anonimle\u015ftirilir.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li><strong>Kontroll\u00fc Eri\u015fim<\/strong>: Eri\u015fim, yaln\u0131zca \u201cbilmesi gereken\u201d ki\u015filerle s\u0131n\u0131rl\u0131d\u0131r.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li><strong>Ticari Kullan\u0131m Yok<\/strong>: Veriler, k\u00e2r elde etmek amac\u0131yla sat\u0131lmaz veya ticari ama\u00e7larla payla\u015f\u0131lmaz. Ancak, REMEDS Platformu ile ili\u015fkili maliyetlerin kar\u015f\u0131lanmas\u0131 i\u00e7in masraflar\u0131n telafisi talep edilebilir.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li><strong>Onay<\/strong>: Ki\u015fisel veriler, \u00f6nceden al\u0131nm\u0131\u015f a\u00e7\u0131k (bilgilendirilmi\u015f) onay olmadan asla payla\u015f\u0131lmayacakt\u0131r.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:paragraph --><\/p>\n<p><strong>8.5. Verilerin i\u015flenmesinin yasal dayana\u011f\u0131<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>Verileri, 8.3. b\u00f6l\u00fcm\u00fcnde belirtilen t\u00fcm ama\u00e7lar do\u011frultusunda \u015fu yasal temellere dayanarak i\u015fliyoruz:\u00a0<br \/><strong>A\u00e7\u0131k r\u0131za<\/strong> (GDPR Madde 6(1)(a) ve Madde 9(2)(a)) veya <strong>Bir s\u00f6zle\u015fmenin ifas\u0131<\/strong> (GDPR Madde 6(1)(b)) veya <strong>Yasal y\u00fck\u00fcml\u00fcl\u00fckler<\/strong> (GDPR Madde 6(1)(c)) veya <strong>Me\u015fru menfaat<\/strong> (GDPR Madde 6(1)(f)) yasalar veya etik kurullar taraf\u0131ndan gerekli g\u00f6r\u00fcld\u00fc\u011f\u00fcnde.\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>Tamamen anonimle\u015ftirilmi\u015f veriler sa\u011flanm\u0131\u015fsa, bunlar\u0131n i\u015flenmesi i\u00e7in herhangi bir onaya gerek yoktur.\u00a0\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>8.6. Verilerinize kim eri\u015febilir?<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p class=\"translation-block\">Ki\u015fisel verilerinize <strong>yaln\u0131zca \u015fu ki\u015filer eri\u015febilir:<\/strong><\/p>\n<p><!-- \/wp:paragraph --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li class=\"translation-block\"><strong>Kepler \u00dcniversitesi Hastanesindeki yetkili t\u0131p uzmanlar\u0131<\/strong> tan\u0131 do\u011frulamas\u0131 yapmak i\u00e7in ve <strong>B) REMEDS Platformuna kay\u0131t amac\u0131yla hastalar\u0131 onaylamak i\u00e7in<\/strong> ve <strong>D) denek olarak kat\u0131l\u0131nabilecek \u00e7al\u0131\u015fmalar \u00f6nermek i\u00e7in.<\/strong><\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li class=\"translation-block\"><strong>REMEDS Platformu y\u00f6neticileri<\/strong> platformun i\u015fletilmesi amac\u0131yla (t\u00fcm verilere, ancak yaln\u0131zca takma ad verilmi\u015f\/anonimle\u015ftirilmi\u015f verilere eri\u015fimle s\u0131n\u0131rl\u0131 olarak) ve ama\u00e7 <strong>A) REMEDS Platformunda hesap olu\u015fturma amac\u0131yla<\/strong> 8.3.A\u2019da belirtilen t\u00fcm verilere, <strong>B) REMEDS Platformuna kay\u0131t amac\u0131yla<\/strong> 8.3.B\u2019de belirtilen verilere (yaln\u0131zca BT i\u015flerinden sorumlu REMEDS y\u00f6neticisi ile s\u0131n\u0131rl\u0131 olmak \u00fczere).<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li class=\"translation-block\">Onaylanm\u0131\u015f <strong>bilimsel ara\u015ft\u0131rmac\u0131lar<\/strong>; yaln\u0131zca takma ad verilmi\u015f\/anonimle\u015ftirilmi\u015f verilere eri\u015fimle s\u0131n\u0131rl\u0131 olarak, ama\u00e7 <strong>C) anketler ve \u00e7al\u0131\u015fmalar<\/strong> i\u00e7in inceleme yapmak ve ama\u00e7 <strong>D) bilimsel ara\u015ft\u0131rmalar ve yay\u0131nlar i\u00e7in.<\/strong><\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li>Yasal olarak gerekli olmas\u0131 halinde d\u00fczenleyici makamlar, etik komisyonlar\u0131.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li class=\"translation-block\">\u00d6zel sekt\u00f6r \u015firketleri; bilimsel ara\u015ft\u0131rma amac\u0131yla <strong>REMEDS Platformu Dan\u0131\u015fma Kurulu\u2019nun onay\u0131 ile<\/strong>, yaln\u0131zca takma ad verilmi\u015f\/anonimle\u015ftirilmi\u015f verilere eri\u015fimle s\u0131n\u0131rl\u0131 olarak, ama\u00e7 <strong>C) anketler ve \u00e7al\u0131\u015fmalar<\/strong> i\u00e7in inceleme yapmak ve ama\u00e7 <strong>D) bilimsel ara\u015ft\u0131rmalar ve yay\u0131nlar i\u00e7in.<\/strong><\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li class=\"translation-block\"><strong>MDS ile ilgilenen ki\u015filer<\/strong> (MDS hastalar\u0131, ebeveynler, yasal vasiler); yaln\u0131zca anonimle\u015ftirilmi\u015f verilere eri\u015fimle s\u0131n\u0131rl\u0131 olarak, ama\u00e7 <strong>C) anketler ve \u00e7al\u0131\u015fmalar<\/strong> i\u00e7in inceleme yapmak ve MDS hakk\u0131nda daha fazla bilgi edinmek amac\u0131yla.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:paragraph --><\/p>\n<p><strong>8.7. Veri saklama ve silme<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>Veriler, REMEDS Platformu devam etti\u011fi s\u00fcrece, yasal olarak gerekti\u011fi s\u00fcrece veya siz onay\u0131n\u0131z\u0131 geri \u00e7ekene kadar (hangisi daha \u00f6nce ger\u00e7ekle\u015firse) saklan\u0131r.\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li><strong>Kimli\u011fi belirlenebilir veriler (tan\u0131mlama verileri)<\/strong> talebiniz \u00fczerine silinebilir.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li><strong>Takma ad verilmi\u015f veriler<\/strong> bilimsel ama\u00e7larla s\u00fcresiz olarak saklan\u0131r.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li><strong>Anonimle\u015ftirilmi\u015f veriler<\/strong> bilimsel ama\u00e7lar i\u00e7in s\u00fcresiz olarak saklan\u0131r.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:paragraph --><\/p>\n<p class=\"translation-block\">\u0130stedi\u011finiz zaman <strong>\u00e7ocu\u011funuzun ki\u015fisel verilerinin<\/strong> silinmesini talep edebilirsiniz. Talebiniz \u00fczerine, gelecekte art\u0131k hi\u00e7bir ki\u015fisel veri toplanmayacakt\u0131r. Ancak, daha \u00f6nce toplanm\u0131\u015f takma ad verilmi\u015f veya anonimle\u015ftirilmi\u015f veriler, REMEDS Platformu\u2019nun ama\u00e7lar\u0131 do\u011frultusunda saklanmaya ve kullan\u0131lmaya devam edebilir.<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>8.8. GDPR kapsam\u0131ndaki haklar\u0131n\u0131z<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>Verilerinizle ilgili olarak a\u015fa\u011f\u0131daki haklara sahipsiniz:\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li>Saklanan verilerinizin bir kopyas\u0131n\u0131 talep edebilirsiniz.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li>Hatal\u0131 veriler i\u00e7in d\u00fczeltme talep edebilirsiniz.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li>Kanunen saklanmas\u0131 gerekmedi\u011fi s\u00fcrece, tan\u0131mlanabilir verilerinizin silinmesini talep edebilirsiniz.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li>Verilerinizin nas\u0131l i\u015flenece\u011fini s\u0131n\u0131rlayabilirsiniz.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li>Onay\u0131n\u0131z\u0131 istedi\u011finiz zaman geri \u00e7ekebilirsiniz ve bu durumda gelecekte veri toplanmayacakt\u0131r.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li>Verilerinizi yap\u0131land\u0131r\u0131lm\u0131\u015f bir formatta talep edebilirsiniz.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:paragraph --><\/p>\n<p>Bu haklar\u0131 kullanmak i\u00e7in l\u00fctfen ileti\u015fime ge\u00e7in: <strong>office@remeds.org<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p class=\"translation-block\">Verilerinizin k\u00f6t\u00fcye kullan\u0131ld\u0131\u011f\u0131n\u0131 d\u00fc\u015f\u00fcn\u00fcyorsan\u0131z, <strong>Avusturya Veri Koruma Otoritesine<\/strong> \u015fikayette bulunma hakk\u0131na sahipsiniz:<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li><strong>Web sitesi<\/strong>: <a href=\"https:\/\/www.dsb.gv.at\/\" target=\"_blank\" rel=\"noreferrer noopener\">www.dsb.gv.at<\/a>\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li><strong>E-posta<\/strong>: dsb@dsb.gv.at\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:paragraph --><\/p>\n<p><strong>8.9. Veri g\u00fcvenli\u011fi \u00f6nlemleri<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p class=\"translation-block\">Verilerinizi korumak i\u00e7in <strong>sekt\u00f6r standard\u0131 g\u00fcvenlik<\/strong> \u00f6nlemleri uyguluyoruz, bunlar \u015funlar\u0131 i\u00e7erir:<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li><strong>\u015eifreleme ve G\u00fcvenli Depolama<\/strong>: Veriler, y\u00fcksek d\u00fczeyde \u015fifreleme ile Avrupa Birli\u011fi (Avusturya) s\u0131n\u0131rlar\u0131 i\u00e7inde bulunan REMEDS Platformu sunucusunda saklanmaktad\u0131r.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li><strong>S\u0131n\u0131rl\u0131 Eri\u015fim<\/strong>: Kimli\u011fi belirlenebilir verilere yaln\u0131zca yetkili personel, \u201cbilmesi gerekti\u011fi\u201d \u00f6l\u00e7\u00fcde eri\u015febilir. REMEDS Platformuna eri\u015fim izni verilen bir ki\u015fi, herhangi bir ki\u015finin kimli\u011fini tespit etmeye \u00e7al\u0131\u015fmama y\u00fck\u00fcml\u00fcl\u00fc\u011f\u00fc alt\u0131ndad\u0131r.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li><strong>Veri \u0130hlali Protokolleri<\/strong>: Bir ihlal durumunda, GDPR taraf\u0131ndan gerekti\u011fi \u015fekilde yetkililer ve etkilenen kat\u0131l\u0131mc\u0131lar bilgilendirilecektir.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:list --><\/p>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul><!-- wp:list-item --><\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li style=\"list-style-type: none;\">\n<ul>\n<li><strong>Takma ad verme (ps\u00f6d\u00f6nimle\u015ftirme)<\/strong>: Takma ad verme, ki\u015fisel verilerinize bir kod atanmas\u0131 ve kimli\u011finizin yaln\u0131zca Kepler \u00dcniversitesi Hastanesi ile BT i\u015flerinden sorumlu REMEDS Platformu y\u00f6neticisinin elinde bulunan bu kod arac\u0131l\u0131\u011f\u0131yla belirlenebilmesi anlam\u0131na gelir. Veriler yaln\u0131zca ps\u00f6d\u00f6nimle\u015ftirilmi\u015f veya anonimle\u015ftirilmi\u015f bi\u00e7imde payla\u015f\u0131lacakt\u0131r. Yay\u0131nlarda da yaln\u0131zca ps\u00f6d\u00f6nimle\u015ftirilmi\u015f veya anonimle\u015ftirilmi\u015f veriler kullan\u0131lacakt\u0131r.\u00a0<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><!-- \/wp:list-item --><\/p>\n<p><!-- \/wp:list --><!-- wp:paragraph --><\/p>\n<p><strong>8.10. \u00c7erezler ve izleme teknolojileri<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p class=\"translation-block\">REMEDS Platformu, <strong>izleme \u00e7erezleri kullanmaz<\/strong> ki\u015fisel veri toplamak i\u00e7in. Yaln\u0131zca platform i\u015flevselli\u011fi i\u00e7in gerekli \u00e7erezler kullan\u0131lmaktad\u0131r.<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>8.11. AB d\u0131\u015f\u0131na veri aktar\u0131m\u0131<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>REMEDS Platformu kapsam\u0131nda, takma ad verilmi\u015f veya anonimle\u015ftirilmi\u015f verilerin, GDPR kapsam\u0131ndakiyle k\u0131yaslanabilir bir koruma d\u00fczeyi sa\u011flamayan AB d\u0131\u015f\u0131ndaki \u00fclkelere (\u00fc\u00e7\u00fcnc\u00fc \u00fclkelere) aktar\u0131m\u0131 ger\u00e7ekle\u015febilir. \u00c7ocu\u011funuzun verilerinin GDPR\u2019a uygun \u015fekilde korunmas\u0131n\u0131 sa\u011flamak i\u00e7in uygun g\u00fcvenlik \u00f6nlemleri al\u0131nacakt\u0131r. Bu g\u00fcvenlik \u00f6nlemleri, standart s\u00f6zle\u015fme maddelerinin kullan\u0131m\u0131 veya \u00fc\u00e7\u00fcnc\u00fc \u00fclkelere veri aktar\u0131m\u0131 s\u0131ras\u0131nda veri koruma standartlar\u0131n\u0131n korunmas\u0131n\u0131 sa\u011flamak \u00fczere tasarlanm\u0131\u015f di\u011fer mekanizmalar\u0131 i\u00e7erebilir.\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>8.12. Bu Gizlilik Bilgilerindeki De\u011fi\u015fiklikler<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>Bu Gizlilik Bilgilerini periyodik olarak g\u00fcncelleyebiliriz. De\u011fi\u015fiklikler, REMEDS Platformu web sitesi ve e-posta bildirimleri arac\u0131l\u0131\u011f\u0131yla duyurulacakt\u0131r.\u00a0\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>8.13. \u0130leti\u015fim bilgileri<\/strong>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p>Veri koruma ile ilgili sorular\u0131n\u0131z i\u00e7in bizimle \u015fu adresten ileti\u015fime ge\u00e7ebilirsiniz:\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>E-posta<\/strong>: <a href=\"mailto:office@remeds.org\" target=\"_blank\" rel=\"noreferrer noopener\">office@remeds.org<\/a>\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>Adres<\/strong>: Premreinergasse 13, 1130 Viyana, Avusturya\u00a0<\/p>\n<p><!-- \/wp:paragraph --><!-- wp:paragraph --><\/p>\n<p><strong>Telefon<\/strong>: +43 678 1215837\u00a0<\/p>\n<p><strong>8.14. Hizmet sa\u011flay\u0131c\u0131lar<\/strong><\/p>\n<p>REMEDS Platformu, hizmet sa\u011flay\u0131c\u0131 olarak Jotform taraf\u0131ndan desteklenmektedir.<\/p>\n<p><!-- \/wp:paragraph --><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"<p>Privacy Policy Information for Parents and Legal Guardians of MDS Patients on the MECP2 Duplication Syndrome Patient Registry and Survey Platform (REMEDS Platform)\u00a0and Privacy NoticeEffective Date: 30.04.2025\u00a0 Dear Parents and Legal Guardians and MDS Patients,\u00a0 Your child or ward (in the following &#8220;child&#8221;) has been diagnosed with MECP2 Duplication Syndrome (MDS). MDS is very rare [&hellip;]<\/p>\n","protected":false},"author":73,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"open","template":"","meta":{"_jf_save_progress":"","footnotes":""},"class_list":["post-3","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/remeds.org\/tr\/wp-json\/wp\/v2\/pages\/3","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/remeds.org\/tr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/remeds.org\/tr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/remeds.org\/tr\/wp-json\/wp\/v2\/users\/73"}],"replies":[{"embeddable":true,"href":"https:\/\/remeds.org\/tr\/wp-json\/wp\/v2\/comments?post=3"}],"version-history":[{"count":10,"href":"https:\/\/remeds.org\/tr\/wp-json\/wp\/v2\/pages\/3\/revisions"}],"predecessor-version":[{"id":3417,"href":"https:\/\/remeds.org\/tr\/wp-json\/wp\/v2\/pages\/3\/revisions\/3417"}],"wp:attachment":[{"href":"https:\/\/remeds.org\/tr\/wp-json\/wp\/v2\/media?parent=3"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}