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We aimed to assess awareness, perceptions, and self-reported transition practices among pediatric nephrologists in T\u00fcrkiye caring for patients with nephropathic cystinosis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We conducted a nationwide descriptive cross-sectional web-based survey of pediatric nephrologists in T\u00fcrkiye who had longitudinally followed at least one patient with nephropathic cystinosis. A 59-item questionnaire covering awareness, perceptions, and self-reported practices was administered via Google Forms, and responses were analysed descriptively at the item level.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>In this nationwide descriptive cross-sectional web-based survey, 48 pediatric nephrologists participated. Respondents worked mainly in university hospitals (47.9%) and training and research hospitals (39.6%) and had a median of 14 years of pediatric nephrology experience (IQR 6\u201317). Although 66.7% distinguished transition from transfer, familiarity with cystinosis-specific transition models was limited; only 16.7% had ever applied a structured model and 8.3% reported a written transition plan in their center. The most frequently perceived challenges were treatment non-adherence (89.6%) and disruption of multidisciplinary follow-up (87.5%). Most respondents reported marked differences between pediatric and adult services, and the median recommended age for initiating transition planning was 17.5 years (IQR 17\u201318). Overall, 91.7% supported the development of a national transition model (58.3% considered it definitely necessary and 33.3% necessary but difficult to implement without external support).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Among pediatric nephrologists in T\u00fcrkiye, awareness of transition-related risks in nephropathic cystinosis was high, but structured transition practices were uncommon and initiation of transition planning was generally recommended at a later age than suggested by current guidance. These findings indicate an implementation gap and support the development of a feasible national transition framework that can be adapted to local resources.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s13023-026-04557-2","type":"journal-article","created":{"date-parts":[[2026,8,26]],"date-time":"2026-08-26T09:36:10Z","timestamp":1787736970000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Awareness, perceptions, and practices regarding transition to adult care for nephropathic cystinosis in T\u00fcrkiye: a nationwide cross-sectional survey of pediatric nephrologists"],"prefix":"10.1186","volume":"21","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5304-3125","authenticated-orcid":false,"given":"Ye\u015fim","family":"\u00d6zdemir Atikel","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sevcan A.","family":"Bakkalo\u011flu","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alev","family":"Y\u0131lmaz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Asl\u0131","family":"\u00c7elebi Tayfur","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Asl\u0131","family":"Kavaz Tufan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Asl\u0131han","family":"Kara","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ay\u015fe Seda","family":"P\u0131narba\u015f\u0131","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aysun","family":"\u00c7alt\u0131k Y\u0131lmaz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bahriye","family":"Atm\u0131\u015f","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bedriye Nuray","family":"Alpman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Beg\u00fcm","family":"Avc\u0131","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Burcu","family":"Yaz\u0131c\u0131o\u011flu","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ece","family":"Demirci Bodur","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emre","family":"Levento\u011flu","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erkin","family":"Serdaro\u011flu","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Esra Nagehan","family":"Akyol \u00d6nder","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"H\u00fclya","family":"Nal\u00e7ac\u0131o\u011flu","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kenan","family":"Y\u0131lmaz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Okan","family":"Akac\u0131","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"\u00d6nder","family":"Yava\u015fcan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"\u00d6zde Nisa","family":"T\u00fcrkkan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sare G\u00fclfem","family":"\u00d6zl\u00fc","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Se\u00e7il","family":"Arslansoyu \u00c7amlar","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Serra","family":"S\u00fcrmeli D\u00f6ven","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Song\u00fcl","family":"Y\u0131lmaz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Y\u0131lmaz","family":"Tabel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rezan","family":"Topalo\u011flu","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,8,26]]},"reference":[{"issue":"6","key":"4557_CR1","doi-asserted-by":"publisher","first-page":"1347","DOI":"10.1007\/s00467-020-04638-9","volume":"36","author":"R Topaloglu","year":"2021","unstructured":"Topaloglu R. 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ESH\/BAEK2026\/307; January 6, 2026). The requirement for written informed consent was waived by the Ethics Committee because this was a voluntary, non-interventional, web-based survey and the analytic dataset was deidentified. No direct personal identifiers were included in the analytic dataset.","order":1,"name":"Ethics","label":"Ethics approval and consent to participate","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Not applicable. This manuscript does not contain any individual person\u2019s identifiable data, images, or videos.","order":2,"name":"Ethics","label":"Consent for publication","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"The authors declare no competing interests.","order":3,"name":"Ethics","label":"Competing interests","group":{"name":"EthicsHeading","label":"Declarations"}}],"article-number":"358"}}