{"id":3451,"date":"2025-07-20T15:20:10","date_gmt":"2025-07-20T13:20:10","guid":{"rendered":"https:\/\/remeds.org\/?page_id=3451"},"modified":"2025-07-24T09:04:05","modified_gmt":"2025-07-24T07:04:05","slug":"faq","status":"publish","type":"page","link":"https:\/\/remeds.org\/tr\/faq\/","title":{"rendered":"SSS"},"content":{"rendered":"<div data-elementor-type=\"wp-page\" data-elementor-id=\"3451\" class=\"elementor elementor-3451\" data-elementor-post-type=\"page\">\n\t\t\t\t<div class=\"elementor-element elementor-element-4dc92081 e-flex e-con-boxed e-con e-parent\" data-id=\"4dc92081\" 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-25e18ef elementor-widget elementor-widget-heading\" data-id=\"25e18ef\" 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\">REMEDS S\u0131k\u00e7a Sorulan Sorular - SSS<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-7dab555a elementor-widget elementor-widget-text-editor\" data-id=\"7dab555a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<h3>1. <strong>REMEDS nedir?<\/strong><\/h3>\n<p class=\"translation-block\">REMEDS, <strong>MECP2 Duplikasyon Sendromu (MDS)<\/strong> tan\u0131s\u0131 alm\u0131\u015f bireyler i\u00e7in g\u00fcvenli, \u00e7ok dilli ve GDPR uyumlu bir platform ve kay\u0131t sistemidir. MDS \u00fczerine ara\u015ft\u0131rmalar\u0131 desteklemek, klinik anlay\u0131\u015f\u0131 geli\u015ftirmek ve daha iyi tedavilerin te\u015fvik edilmesi amac\u0131yla t\u0131bbi veriler toplar.<\/p>\n<h3>2. <strong>REMEDS\u2019i kimler kullanabilir?<\/strong><\/h3>\n<p>MDS\u2019li birinin ebeveynleri, bak\u0131c\u0131lar\u0131 veya yasal vasileri hesap olu\u015fturup bir hasta kayd\u0131 yapabilir. Ara\u015ft\u0131rmac\u0131lar ve sa\u011fl\u0131k profesyonelleri ise sendrom hakk\u0131nda daha fazla bilgi edinmek amac\u0131yla onaylanm\u0131\u015f \u00e7al\u0131\u015fmalar i\u00e7in anonimle\u015ftirilmi\u015f veya takma ad verilmi\u015f verilere eri\u015fim ba\u015fvurusunda bulunabilir.<\/p>\n<h3>3. <strong>Halihaz\u0131rda ba\u015fka bir kay\u0131t veya \u00e7al\u0131\u015fmada yer al\u0131yorsam kay\u0131t olabilir miyim?<\/strong><\/h3>\n<p class=\"translation-block\">Evet! REMEDS, <strong>MECP2 Duplikasyon Sendromu tan\u0131s\u0131 kesinle\u015fmi\u015f herkese<\/strong> a\u00e7\u0131kt\u0131r; nerede ya\u015fad\u0131\u011f\u0131n\u0131z\u0131n ya da h\u00e2lihaz\u0131rda ba\u015fka bir kay\u0131t sistemine veya \u00e7al\u0131\u015fmaya dahil olup olmad\u0131\u011f\u0131n\u0131z\u0131n \u00f6nemi yoktur. Yine de REMEDS'e kaydolabilir ve katk\u0131da bulunabilirsiniz. Kat\u0131l\u0131m g\u00f6n\u00fcll\u00fcd\u00fcr, m\u00fcnhas\u0131r de\u011fildir ve di\u011fer ara\u015ft\u0131rma \u00e7al\u0131\u015fmalar\u0131n\u0131 tamamlay\u0131c\u0131 nitelikte tasarlanm\u0131\u015ft\u0131r.<\/p>\n<h3><strong>4. Vefat etmi\u015f bir hastay\u0131 kaydettirebilir miyim?<\/strong><o:p><\/o:p><\/h3>\n\n<p data-start=\"386\" data-end=\"610\" class=\"translation-block\">Evet, yapabilirsiniz ve bunu te\u015fvik ediyoruz. REMEDS, Rett Sendromu'nun tamam\u0131n\u0131, bu durumla ka\u00e7 ki\u015finin ya\u015fad\u0131\u011f\u0131n\u0131 ve durumun zaman i\u00e7inde nas\u0131l ilerledi\u011fini daha iyi anlamak i\u00e7in olu\u015fturulmu\u015ftur.<\/p>\n\n<p data-start=\"612\" data-end=\"820\">Vefat etmi\u015f bir hastay\u0131 kaydetmek, ara\u015ft\u0131rmac\u0131lar\u0131n gelecek nesiller i\u00e7in kal\u0131plar\u0131, risk fakt\u00f6rlerini ve potansiyel tedavileri belirlemesine yard\u0131mc\u0131 olabilecek \u00f6nemli klinik ve genetik verilerin dahil edilmesini sa\u011flar.<o:p><\/o:p><\/p>\n\n<h3><span style=\"font-size: 1rem;\">T\u00fcm bilgiler, ara\u015ft\u0131rma toplulu\u011fu ve di\u011fer aileler i\u00e7in de\u011ferlidir.<\/span><\/h3><h3>5. <strong>Kat\u0131lman\u0131n bir bedeli var m\u0131?<\/strong><\/h3>\n<p>Hay\u0131r. REMEDS\u2019e kat\u0131l\u0131m \u00fccretsizdir. Kay\u0131t olmak veya veri girmek i\u00e7in herhangi bir \u00f6deme ya da geri \u00f6deme talep edilmez.<\/p>\n<h3>6. <strong>Hangi veriler toplan\u0131yor?<\/strong><\/h3>\n<p>REMEDS \u015funlar\u0131 toplayabilir:<\/p>\n<ul>\n<li>Temel bilgiler (\u00f6rn. ad, do\u011fum tarihi, uyruk, cinsiyet)<\/li>\n<li>Genetik rapor (kay\u0131t i\u00e7in)<\/li>\n<li>T\u0131bbi ge\u00e7mi\u015f, semptomlar ve tedaviler (anketler arac\u0131l\u0131\u011f\u0131yla)<\/li>\n<li>\u0130leti\u015fim ve hesap bilgileriniz<\/li>\n<\/ul>\n<p>Bilimsel ara\u015ft\u0131rmalar i\u00e7in veya uygunlu\u011fu do\u011frulamak amac\u0131yla yaln\u0131zca gerekli asgari veriler toplan\u0131r.<\/p>\n<h3>7. <strong>Verilerim nas\u0131l korunuyor?<\/strong><\/h3>\n<p>REMEDS s\u0131k\u0131 g\u00fcvenlik ve gizlilik protokollerini takip eder:<\/p>\n<ul>\n<li>T\u00fcm veriler \u015fifrelenir ve AB'deki sunucularda g\u00fcvenli bir \u015fekilde saklan\u0131r<\/li>\n<li>Ki\u015fisel veriler, ara\u015ft\u0131rma amac\u0131yla kullan\u0131lmak \u00fczere ayr\u0131l\u0131r ve takma ad verilmi\u015f veya anonimle\u015ftirilmi\u015f hale getirilir<\/li>\n<li>Yaln\u0131zca REMEDS dan\u0131\u015fma kurulu taraf\u0131ndan yetkilendirilmi\u015f personel, kimli\u011fi belirlenebilir verilere, yaln\u0131zca gerekti\u011fi \u00f6l\u00e7\u00fcde, eri\u015febilir<\/li>\n<li class=\"translation-block\">Ki\u015fisel verileriniz <strong>asla sat\u0131lmaz<\/strong> ve ara\u015ft\u0131rma eri\u015fimi yaln\u0131zca ticari olmayan ama\u00e7larla sa\u011flan\u0131r<\/li>\n<\/ul>\n<h3>8. <strong>Verilere kimler eri\u015febilir?<\/strong><\/h3>\n<ul>\n<li><strong>REMEDS y\u00f6neticileri<\/strong>: yaln\u0131zca takma ad verilmi\u015f\/anonimle\u015ftirilmi\u015f verilere eri\u015febilir<\/li>\n<li><strong>BT ile ilgili konulardan sorumlu REMEDS y\u00f6neticisi<\/strong>: yaln\u0131zca BT konular\u0131nda eri\u015febilir<\/li>\n<li><strong>JKU t\u0131p personeli<\/strong>: tan\u0131 incelemesi ve kat\u0131l\u0131mc\u0131 se\u00e7imi i\u00e7in<\/li>\n<li><strong>Onayl\u0131 ara\u015ft\u0131rmac\u0131lar<\/strong>: yaln\u0131zca takma ad verilmi\u015f\/anonimle\u015ftirilmi\u015f verilere eri\u015febilir<\/li>\n<li><strong>Aileler ve kamu<\/strong>: sadece anonimle\u015ftirilmi\u015f (asla tan\u0131mlanamayan) verilere<\/li>\n<li><strong>Yetkililer<\/strong>: yasa veya etik kurullar taraf\u0131ndan gerekli g\u00f6r\u00fclmesi halinde<\/li>\n<\/ul>\n<h3>9. <strong>\u0130la\u00e7 \u015firketleri verilerimi g\u00f6rebilir mi?<\/strong><\/h3>\n<p class=\"translation-block\">Yaln\u0131zca <strong>tamamen anonimle\u015ftirilmi\u015f veriler<\/strong> \u00f6zel sekt\u00f6r ara\u015ft\u0131rmac\u0131lar\u0131yla ve yaln\u0131zca REMEDS Platformu Dan\u0131\u015fma Kurulu taraf\u0131ndan onayland\u0131ktan sonra payla\u015f\u0131labilir. <strong>Ki\u015fisel bilgilerinize veya ileti\u015fim bilgilerinize eri\u015femezler<\/strong>. Ionis gibi bir \u015firket ailelerle ileti\u015fime ge\u00e7mek isterse, REMEDS ileti\u015fim bilgilerini yay\u0131nlayacakt\u0131r ve g\u00f6n\u00fcll\u00fc olarak ula\u015fmak size kalm\u0131\u015ft\u0131r.<\/p>\n<h3>10. <strong>Verilerimin nas\u0131l kullan\u0131ld\u0131\u011f\u0131n\u0131 kontrol edebilir miyim?<\/strong><\/h3>\n<p class=\"translation-block\">Evet. Her \u00e7al\u0131\u015fma veya anket i\u00e7in <strong>ayr\u0131 onay<\/strong> vermeniz gerekir. Verileriniz, sizin a\u00e7\u0131k izniniz olmadan asla payla\u015f\u0131lmaz.<\/p>\n<h3>11. <strong>Onay\u0131m\u0131 geri \u00e7ekersem ne olur?<\/strong><\/h3>\n<p class=\"translation-block\">\u0130stedi\u011finiz zaman ayr\u0131labilirsiniz. Yeni ki\u015fisel veriler toplanmaz ve talep \u00fczerine kimli\u011fi belirlenebilir t\u00fcm veriler silinir. Daha \u00f6nce toplanm\u0131\u015f <strong>takma ad verilmi\u015f (ps\u00f6d\u00f6nimle\u015ftirilmi\u015f) veya anonimle\u015ftirilmi\u015f veriler<\/strong> ise, yasal olarak k\u0131s\u0131tlanmad\u0131\u011f\u0131 s\u00fcrece bilimsel ama\u00e7larla <strong>kullan\u0131lmaya devam edebilir.<\/strong><\/p>\n<h3>12. <strong>Verilerim ne kadar s\u00fcreyle saklanacak?<\/strong><\/h3>\n<ul>\n<li>Kimli\u011fi belirlenebilir veriler: Yaln\u0131zca hesab\u0131n\u0131z aktif oldu\u011fu s\u00fcrece veya silme talebinde bulunana kadar saklan\u0131r.<\/li>\n<li>Takma ad verilmi\u015f (ps\u00f6d\u00f6nimle\u015ftirilmi\u015f) veriler: Devam eden bilimsel ara\u015ft\u0131rmalar i\u00e7in tutulur.<\/li>\n<li>Anonimle\u015ftirilmi\u015f veriler: Ara\u015ft\u0131rma ve istatistiksel analiz i\u00e7in s\u00fcresiz olarak saklan\u0131r.<\/li>\n<\/ul>\n<h3>13. <strong>GDPR kapsam\u0131ndaki haklar\u0131m nelerdir?<\/strong><\/h3>\n<p>A\u015fa\u011f\u0131daki haklara sahipsiniz:<\/p>\n<ul>\n<li>Verilerinizin i\u015flenme \u015feklini k\u0131s\u0131tlama<\/li>\n<li>Verilerinizin nas\u0131l i\u015flendi\u011fini s\u0131n\u0131rland\u0131r\u0131n<\/li>\n<li>Onay\u0131 istedi\u011finiz zaman geri \u00e7ekme<\/li>\n<li>Verilerinizi ta\u015f\u0131nabilir bir formatta talep etme<\/li>\n<li>Kurum'a \u015fikayette bulunun <strong>Avusturya Veri Koruma Kurumu<\/strong> (<a href=\"http:\/\/www.dsb.gv.at\">dsb.gv.at<\/a>, dsb@dsb.gv.at)<\/li>\n<\/ul>\n<p class=\"translation-block\">Haklar\u0131n\u0131z\u0131 kullanmak i\u00e7in office@remeds.org\n adresine e-posta g\u00f6nderebilirsiniz<\/p>\n<h3>14. <strong>Verilerim AB d\u0131\u015f\u0131na aktar\u0131lacak m\u0131?<\/strong><\/h3>\n<p>M\u00fcmk\u00fcn. Takma ad verilmi\u015f (ps\u00f6d\u00f6nimle\u015ftirilmi\u015f) veya anonimle\u015ftirilmi\u015f veriler AB d\u0131\u015f\u0131na aktar\u0131labilir, ancak yaln\u0131zca GDPR uyumlulu\u011funu sa\u011flamak i\u00e7in g\u00fc\u00e7l\u00fc g\u00fcvenceler (\u00f6r. standart s\u00f6zle\u015fme maddeleri) ile birlikte.<\/p>\n<h3>15. <strong>REMEDS \u00e7erez kullan\u0131yor mu?<\/strong><\/h3>\n<p class=\"translation-block\">Platform i\u015flevselli\u011fini desteklemek i\u00e7in yaln\u0131zca <strong>gerekli \u00e7erezler<\/strong> kullan\u0131lmaktad\u0131r. REMEDS, takip \u00e7erezleri <strong>kullanmaz<\/strong> ve \u00e7erezler arac\u0131l\u0131\u011f\u0131yla ki\u015fisel veri toplamaz.<\/p>\n<h3>16. <strong>REMEDS'yi kim y\u00f6netiyor?<\/strong><\/h3>\n<p class=\"translation-block\">REMEDS, k\u00e2r amac\u0131 g\u00fctmeyen dernek olan <strong>\"Verein zur Unterst\u00fctzung von Kindern mit MECP2 Duplikation Syndrom (Lasst uns MDS heilen \u2013 DupMECP2)\"<\/strong> taraf\u0131ndan, Avusturya Linz'deki <strong>Kepler University Hospital<\/strong> ile i\u015f birli\u011fi i\u00e7inde y\u00fcr\u00fct\u00fclmektedir.<\/p>\n<h3>17. <strong>Sorular\u0131m i\u00e7in kiminle ileti\u015fime ge\u00e7ebilirim?<\/strong><\/h3>\n<p>E-posta: <strong>office@remeds.org<\/strong><br>Adres Premreinergasse 13, 1130 Viyana, Avusturya<br>&nbsp;Telefon +43 678 1215837<\/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>REMEDS Frequently Asked Questions &#8211; FAQ 1. What is REMEDS? REMEDS is a secure, multilingual, GDPR-compliant platform and registry for individuals diagnosed with MECP2 Duplication Syndrome (MDS). It collects medical data to support research, improve clinical understanding, and promote better treatments for MDS. 2. Who can use REMEDS? Parents, caregivers, or legal guardians of someone [&hellip;]<\/p>\n","protected":false},"author":114,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_jf_save_progress":"","footnotes":""},"class_list":["post-3451","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/remeds.org\/tr\/wp-json\/wp\/v2\/pages\/3451","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\/114"}],"replies":[{"embeddable":true,"href":"https:\/\/remeds.org\/tr\/wp-json\/wp\/v2\/comments?post=3451"}],"version-history":[{"count":10,"href":"https:\/\/remeds.org\/tr\/wp-json\/wp\/v2\/pages\/3451\/revisions"}],"predecessor-version":[{"id":3502,"href":"https:\/\/remeds.org\/tr\/wp-json\/wp\/v2\/pages\/3451\/revisions\/3502"}],"wp:attachment":[{"href":"https:\/\/remeds.org\/tr\/wp-json\/wp\/v2\/media?parent=3451"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}