{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,12]],"date-time":"2026-08-12T02:48:36Z","timestamp":1786502916874,"version":"build-2736575974"},"reference-count":11,"publisher":"Akademiai Kiado Zrt.","issue":"34","license":[{"start":{"date-parts":[[2023,8,27]],"date-time":"2023-08-27T00:00:00Z","timestamp":1693094400000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["akjournals.com"],"crossmark-restriction":true},"short-container-title":["OH"],"published-print":{"date-parts":[[2023,8,27]]},"abstract":"<jats:p><jats:italic>Bevezet\u00e9s:<\/jats:italic> Az aniridia ritka, velesz\u00fcletett panocularis\n                    betegs\u00e9g, mely a l\u00e1t\u00f3\u00e9less\u00e9g k\u00fcl\u00f6nb\u00f6z\u0151 m\u00e9rt\u00e9k\u0171 cs\u00f6kken\u00e9s\u00e9vel j\u00e1r.\n                        <jats:italic>C\u00e9lkit\u0171z\u00e9s:<\/jats:italic> Velesz\u00fcletett aniridi\u00e1s betegek\n                    l\u00e1t\u00e1sk\u00e1rosod\u00e1sukkal kapcsolatos tapasztalatainak felm\u00e9r\u00e9se Magyarorsz\u00e1gon egy,\n                    az ANIRIDIA-NET \u00e1ltal k\u00e9sz\u00edtett k\u00e9rd\u0151\u00edv seg\u00edts\u00e9g\u00e9vel. <jats:italic>Betegek \u00e9s\n                        m\u00f3dszer:<\/jats:italic> A vizsg\u00e1latba a Semmelweis Egyetem Szem\u00e9szeti Klinik\u00e1j\u00e1n\n                    2005. okt\u00f3ber \u00e9s 2022. m\u00e1jus k\u00f6z\u00f6tt congenitalis aniridia diagn\u00f3zis\u00e1val vizsg\u00e1lt\n                    vagy kezelt betegeket v\u00e1logattuk be. A betegek az ANIRIDIA-NET 20 pontb\u00f3l \u00e1ll\u00f3\n                    k\u00e9rd\u0151\u00edv\u00e9nek magyar nyelv\u0171 v\u00e1ltozat\u00e1t t\u00f6lt\u00f6tt\u00e9k ki a seg\u00edts\u00e9g\u00fcnkkel. A k\u00e9rd\u0151\u00edv\n                    kit\u00e9rt a demogr\u00e1fiai adatokra, a betegs\u00e9g okozta leggyakoribb panaszokra, a\n                    k\u00fcl\u00f6nb\u00f6z\u0151 \u00e9lethelyzetekben tapasztalt, gyeng\u00e9nl\u00e1t\u00e1s okozta neh\u00e9zs\u00e9gekre, illetve\n                    gyeng\u00e9nl\u00e1t\u00f3-seg\u00e9deszk\u00f6z\u00f6k haszn\u00e1lat\u00e1nak gyakoris\u00e1g\u00e1ra.\n                        <jats:italic>Eredm\u00e9nyek:<\/jats:italic> A k\u00e9rd\u0151\u00edvet 33 szem\u00e9ly (17 n\u0151 [51,5%] \u00e9s 16\n                    f\u00e9rfi [48,5%]), 16 (48,5%) gyermek \u00e9s 17 (51,5%) feln\u0151tt t\u00f6lt\u00f6tte ki, \u00e9letkoruk\n                    25,69 \u00b1 17,49 \u00e9v (5\u201359 \u00e9v) volt. Mindennapi gyakoris\u00e1ggal f\u00e9ny\u00e9rz\u00e9kenys\u00e9get 27\n                    f\u0151 (81,8%), szemsz\u00e1razs\u00e1got 5 f\u0151 (15,2%), k\u00f6nnyez\u00e9st 4 f\u0151 (12,1%), ingadoz\u00f3\n                    l\u00e1t\u00e1st 3 f\u0151 (9,1%), szemf\u00e1jdalmat 2 f\u0151 (6,1%) eml\u00edtett. A megk\u00e9rdezettek\n                    t\u00f6bbs\u00e9ge \u00fagy nyilatkozott, hogy a szem\u00e9lyes kommunik\u00e1ci\u00f3 az iskolat\u00e1rsakkal (16\n                    f\u0151 [48,5%]), illetve munkahelyi koll\u00e9g\u00e1kkal (11 f\u0151 [33,3%]) soha nem okoz\n                    neh\u00e9zs\u00e9get a l\u00e1t\u00e1ss\u00e9r\u00fcl\u00e9s\u00fck miatt. Soha nem tartott ig\u00e9nyt seg\u00edts\u00e9gre 29 f\u0151\n                    (87,9%) az otthoni napi rutinban, 24 f\u0151 (72,7%) iskol\u00e1ba\/munk\u00e1ba jut\u00e1shoz, 17 f\u0151\n                    (51,5%) k\u00fcl\u00f6nb\u00f6z\u0151 tev\u00e9kenys\u00e9gekben val\u00f3 r\u00e9szv\u00e9telhez. Soha nem haszn\u00e1lt\n                    gyeng\u00e9nl\u00e1t\u00f3-seg\u00e9deszk\u00f6zt 29 f\u0151 (87,8%) a kommunik\u00e1ci\u00f3n\u00e1l, 23 f\u0151 (69,7%)\n                    utaz\u00e1sn\u00e1l, 20 f\u0151 (60,6%) t\u00e1rsadalmi tev\u00e9kenys\u00e9gekben val\u00f3 r\u00e9szv\u00e9teln\u00e9l, 18 f\u0151\n                    (54,5%) tanul\u00e1s\/munka sor\u00e1n. <jats:italic>K\u00f6vetkeztet\u00e9s:<\/jats:italic> Noha az aniridia\n                    cs\u00f6kkent l\u00e1t\u00f3\u00e9less\u00e9ggel j\u00e1r, a congenitalis aniridi\u00e1s szem\u00e9lyek t\u00f6bbs\u00e9ge,\n                    k\u00fcl\u00f6n\u00f6sen gyermekkorban, szem\u00e9szeti panaszai ellen\u00e9re neh\u00e9zs\u00e9g n\u00e9lk\u00fcl \u00e9li meg a\n                    szem\u00e9lyes kommunik\u00e1ci\u00f3t \u00e9s a k\u00fcl\u00f6nf\u00e9le \u00e9lethelyzeteket. A\n                    gyeng\u00e9nl\u00e1t\u00f3-seg\u00e9deszk\u00f6z\u00f6k fontos seg\u00edts\u00e9get jelenthetnek sz\u00e1mukra\n                    feln\u0151ttkorukra, illetve az \u00e9letkor el\u0151rehaladt\u00e1val. Orv Hetil. 2023; 164(34):\n                    1342\u20131349.<\/jats:p>","DOI":"10.1556\/650.2023.32845","type":"journal-article","created":{"date-parts":[[2023,8,29]],"date-time":"2023-08-29T07:23:50Z","timestamp":1693293830000},"page":"1342-1349","update-policy":"https:\/\/doi.org\/10.1556\/policypage.crossmark.crossref.2","source":"Crossref","is-referenced-by-count":1,"title":["Velesz\u00fcletett aniridi\u00e1s betegek l\u00e1t\u00e1sk\u00e1rosod\u00e1ssal kapcsolatos tapasztalatai Magyarorsz\u00e1gon."],"prefix":"10.1556","volume":"164","author":[{"given":"M\u00e1ria","family":"Csidey","sequence":"first","affiliation":[{"name":"Semmelweis Egyetem, \u00c1ltal\u00e1nos Orvostudom\u00e1nyi Kar, Szem\u00e9szeti Klinika Budapest, M\u00e1ria u. 39., 1085 Magyarorsz\u00e1g"},{"name":"Heim P\u00e1l Orsz\u00e1gos Gyermekgy\u00f3gy\u00e1szati Int\u00e9zet Budapest Magyarorsz\u00e1g"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christina","family":"Grupcheva","sequence":"additional","affiliation":[{"name":"Department of Ophthalmology and Visual Science, Medical University Varna Bulgaria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tanja","family":"Stachon","sequence":"additional","affiliation":[{"name":"Dr. Rolf M. Schwiete Zentrum f\u00fcr Limbusstammzellforschung und Kongenitale Aniridie, Universit\u00e4t des Saarlandes Homburg\/Saar Deutschland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dietmar","family":"Hecker","sequence":"additional","affiliation":[{"name":"Klinik f\u00fcr Hals-, Nasen- und Ohrenheilkunde, Universit\u00e4tsklinikum des Saarlandes und Medizinische Fakult\u00e4t der Universit\u00e4t des Saarlandes Homburg Deutschland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Annam\u00e1ria","family":"N\u00e1ray","sequence":"additional","affiliation":[{"name":"Semmelweis Egyetem, \u00c1ltal\u00e1nos Orvostudom\u00e1nyi Kar, Szem\u00e9szeti Klinika Budapest, M\u00e1ria u. 39., 1085 Magyarorsz\u00e1g"},{"name":"Dr. Rolf M. 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Schwiete Zentrum f\u00fcr Limbusstammzellforschung und Kongenitale Aniridie, Universit\u00e4t des Saarlandes Homburg\/Saar Deutschland"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"425","reference":[{"key":"ref0","doi-asserted-by":"publisher","first-page":"479","DOI":"10.3341\/kjo.2014.28.6.479","article-title":"Congenital aniridia: long-term clinical course, visual outcome, and prognostic factors","volume":"28","author":"1 Chang","year":"2014","unstructured":"1 Chang JW, Kim JH, Kim SJ, et al. Congenital aniridia: long-term clinical course, visual outcome, and prognostic factors. Korean J Ophthalmol. 2014; 28: 479-485.","journal-title":"Korean J Ophthalmol"},{"key":"ref1","doi-asserted-by":"publisher","unstructured":"2 N\u00e1ray A, Csidey M, K\u00e9ki-Kov\u00e1cs K, et al. Congenital aniridia. Hungarian data of a spectrum disease. [Congenitalis aniridia - egy spektrumbetegs\u00e9g magyarorsz\u00e1gi adatai.] Orv Hetil. 2023; 164: 148-155. [Hungarian]","DOI":"10.1556\/650.2023.32697"},{"key":"ref2","unstructured":"3 Csidey M, Maka E, Bausz M, et al. Foveal hypoplasia in aniridia. [Aniridi\u00e1sok fovea hypoplasi\u00e1ja.] Szem\u00e9szet 2019; 156: 221-224. [Hungarian]"},{"key":"ref3","doi-asserted-by":"publisher","unstructured":"4 K\u00e4smann-Kellner B, Seitz B. Aniridia syndrome: clinical findings, problematic courses and suggestions for optimization of care (\"aniridia guide\"). [Aniridiesyndrom: Klinische Befunde, problematische Verl\u00e4ufe und Vorschlag zur Betreuungsoptimierung (\"Aniridielotse\").] Ophthalmologe 2014; 111: 1145-1156. [German]","DOI":"10.1007\/s00347-014-3060-x"},{"key":"ref4","doi-asserted-by":"publisher","first-page":"4091","DOI":"10.1007\/s10792-021-01982-z","article-title":"An attempt to optimize the outcome of penetrating keratoplasty in congenital aniridia-associated keratopathy (AAK)","volume":"41","author":"5 Farah","year":"2021","unstructured":"5 Farah CJ, Fries FN, Latta L, et al. An attempt to optimize the outcome of penetrating keratoplasty in congenital aniridia-associated keratopathy (AAK). Int Ophthalmol. 2021; 41: 4091-4098.","journal-title":"Int Ophthalmol"},{"key":"ref5","doi-asserted-by":"publisher","unstructured":"6 K\u00e4smann-Kellner B, Seitz B. Congenital aniridia or PAX6 syndrome? [Kongenitale Aniridie oder PAX6-Syndrom?] Ophthalmologe 2014; 111: 1144. [German]","DOI":"10.1007\/s00347-014-3058-4"},{"key":"ref6","doi-asserted-by":"publisher","first-page":"135","DOI":"10.1586\/17469899.2016.1152182","article-title":"Congenital aniridia: etiology, manifestations and management","volume":"11","author":"7 Samant","year":"2016","unstructured":"7 Samant M, Chauhan BK, Lathrop KL, et al. Congenital aniridia: etiology, manifestations and management. Expert Rev Ophthalmol. 2016; 11: 135-144.","journal-title":"Expert Rev Ophthalmol"},{"key":"ref7","doi-asserted-by":"publisher","unstructured":"8 Kiss E, Pajor E. Joint efforts for saving vision: overview of the prevention of vision loss inside and outside Hungary. [\u00d6sszefog\u00e1s a l\u00e1t\u00e1s v\u00e9delm\u00e9ben: k\u00f6rk\u00e9p a l\u00e1t\u00e1sroml\u00e1s prevenci\u00f3j\u00e1nak hazai \u00e9s nemzetk\u00f6zi helyzet\u00e9r\u0151l.] Orv Hetil. 2021: 162: 1187-1197. [Hungarian]","DOI":"10.1556\/650.2021.32187"},{"key":"ref8","unstructured":"9 D\u00e1vid A, Gad\u00f3 M, Cs\u00e1kv\u00e1ri J. Protocol for rehabilitation of people with vision loss. [L\u00e1t\u00e1ss\u00e9r\u00fclt emberek elemi \u00e9s foglalkoz\u00e1si rehabilit\u00e1ci\u00f3ja. \u00datmutat\u00f3.] Fogyat\u00e9kos Szem\u00e9lyek Es\u00e9lyegyenl\u0151s\u00e9g\u00e9rt K\u00f6zalap\u00edtv\u00e1ny, Budapest, 2008. [Hungarian]"},{"key":"ref9","unstructured":"10 Zaj\u00e1cz M, Juh\u00e1sz F, Ungv\u00e1ry L. Ophthalmological diseases. [L\u00e1t\u00f3szervi k\u00e1rosod\u00e1sok.] Available from: https:\/\/docplayer.hu\/1386037-Latoszervi-karosodasok-zajacz-magdolna-juhasz-ferenc-ungvary-lilla-27-fejezet.html [accessed: May 28, 2023]. [Hungarian]"},{"key":"ref10","unstructured":"11 Barcsay Gy, Barcsay-Veres A. Vision rehabilitation services for adults in Hungary. [L\u00e1t\u00e1srehabilit\u00e1ci\u00f3s lehet\u0151s\u00e9gek feln\u0151tteknek Magyarorsz\u00e1gon.] Szem\u00e9szet 2019; 156: 145-147. [Hungarian]"}],"container-title":["Orvosi Hetilap"],"original-title":[],"link":[{"URL":"https:\/\/akjournals.com\/view\/journals\/650\/164\/34\/article-p1342.xml","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/akjournals.com\/view\/journals\/650\/164\/34\/article-p1342.xml","content-type":"text\/html","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/akjournals.com\/view\/journals\/650\/164\/34\/article-p1342.xml","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,10,26]],"date-time":"2023-10-26T14:17:01Z","timestamp":1698329821000},"score":1,"resource":{"primary":{"URL":"https:\/\/akjournals.com\/view\/journals\/650\/164\/34\/article-p1342.xml"}},"subtitle":["Az ANIRIDIA-NET felm\u00e9r\u00e9se"],"short-title":[],"issued":{"date-parts":[[2023,8,27]]},"references-count":11,"journal-issue":{"issue":"34"},"URL":"https:\/\/doi.org\/10.1556\/650.2023.32845","relation":{},"ISSN":["0030-6002","1788-6120"],"issn-type":[{"value":"0030-6002","type":"print"},{"value":"1788-6120","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,8,27]]}}}