{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,27]],"date-time":"2026-08-27T19:12:13Z","timestamp":1787857933884,"version":"build-2784847793"},"reference-count":25,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2022,2,11]],"date-time":"2022-02-11T00:00:00Z","timestamp":1644537600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Pulmonology"],"published-print":{"date-parts":[[2022,5]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Cystic fibrosis (CF) registries play an essential role in improving disease outcomes of people with CF. This study aimed to evaluate the association of newly established CF registry system in Turkey on follow\u2010up, clinical, growth, treatment, and complications of people with this disease.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Age at diagnosis, current age, sex, <jats:italic>z<\/jats:italic>\u2010scores of weight, height and body mass index (BMI), neonatal screening results, pulmonary function tests, history of meconium ileus, medications, presence of microorganisms, and follow\u2010up were evaluated and compared to data of people with CF represented in both 2017 and 2019 registry data.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>There were 1170 people with CF in 2017 and 1637 in 2019 CF registry. Eight hundred and fourteen people were registered in both 2017 and 2019 of whom <jats:italic>z<\/jats:italic>\u2010scores of heights and BMI were significantly higher in 2019 (<jats:italic>p<\/jats:italic>\u2009=\u20090.002,\u00a0<jats:italic>p<\/jats:italic>\u2009=0.039, respectively). Inhaled hypertonic saline, bronchodilator, and azithromycin usages were significantly higher in 2019 (<jats:italic>p<\/jats:italic>\u2009=0.001,\u00a0<jats:italic>p<\/jats:italic>\u2009=\u20090.001,\u00a0<jats:italic>p<\/jats:italic>\u2009=\u20090.003, respectively). The percent predicted of forced expiratory volume in \u20091 sec and forced vital capacity were similar in 2017 and 2019 (88% and 89.5%,\u00a0<jats:italic>p<\/jats:italic>\u2009=\u20090.248\u00a0and 84.5% and 87%,\u00a0<jats:italic>p<\/jats:italic>\u2009=0.332, respectively). Liver diseases and osteoporosis were significantly higher, and pseudo\u2010Bartter syndrome (PBS) was significantly lower in 2019 (<jats:italic>p<\/jats:italic>\u2009=\u20090.011,\u00a0<jats:italic>p<\/jats:italic>\u2009=\u20090.001,\u00a0<jats:italic>p<\/jats:italic>\u2009=\u20090.001,\u00a0respectively).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>The <jats:italic>z<\/jats:italic>\u2010scores of height and BMI were higher, the use of medications that protect and improve lung functions was higher and incidence of PBS was lower in 2019. It was predicted that registry system increased the care of people with CF regarding their follow\u2010up. The widespread use of national CF registry system across the country may be beneficial for the follow\u2010up of people with CF.<\/jats:p><\/jats:sec>","DOI":"10.1002\/ppul.25852","type":"journal-article","created":{"date-parts":[[2022,2,1]],"date-time":"2022-02-01T06:34:28Z","timestamp":1643697268000},"page":"1245-1252","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["The success of the Cystic Fibrosis Registry of Turkey for improvement of patient care"],"prefix":"10.1002","volume":"57","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9575-3982","authenticated-orcid":false,"given":"Pelin","family":"Asfuroglu","sequence":"first","affiliation":[{"name":"Department of Pediatric Pulmonology, Faculty of Medicine Gazi University  Ankara Turkey"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tugba","family":"Sismanlar Eyuboglu","sequence":"additional","affiliation":[{"name":"Department of Pediatric 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Ufuk","family":"Altintas","sequence":"additional","affiliation":[{"name":"Department of Pediatric Allergy and Immunology, Faculty of Medicine Cukurova University  Adana Turkey"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dilek","family":"Ozcan","sequence":"additional","affiliation":[{"name":"Department of Pediatric Allergy and Immunology, Faculty of Medicine Cukurova University  Adana Turkey"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2879-8910","authenticated-orcid":false,"given":"Ayse Ayzit","family":"Kilinc","sequence":"additional","affiliation":[{"name":"Department of Pediatric Pulmonology, Cerrahpasa Medicine Faculty Istanbul University  Istanbul Turkey"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Haluk","family":"Cokugras","sequence":"additional","affiliation":[{"name":"Department of Pediatric Pulmonology, Cerrahpasa Medicine Faculty Istanbul University  Istanbul 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