The success of the Cystic Fibrosis Registry of Turkey for improvement of patient care

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dc.authoridKartal Öztürk, Gökçen/0000-0002-0793-9710
dc.authoridYÜKSEL, Hasan/0000-0001-9577-8445
dc.authoridAsfuroğlu, Pelin/0000-0002-9575-3982
dc.authoridArik, Elif/0000-0002-7319-8535
dc.authorid, erdembasaran/0000-0002-9092-6936
dc.authoridCobanoglu, Nazan/0000-0002-3686-2927
dc.authoridCekic, Sukru/0000-0002-9574-1842
dc.authorwosidKartal Öztürk, Gökçen/AAM-9743-2021
dc.authorwosidÜnal, Gökçen/JDC-4251-2023
dc.authorwosidYÜKSEL, Hasan/A-1474-2013
dc.authorwosidAsfuroğlu, Pelin/AHD-5520-2022
dc.authorwosidArik, Elif/AFX-2111-2022
dc.authorwosid, erdembasaran/AFN-3515-2022
dc.authorwosidCobanoglu, Nazan/AAF-8149-2020
dc.contributor.authorAsfuroglu, Pelin
dc.contributor.authorEyuboglu, Tugba Sismanlar
dc.contributor.authorAslan, Ayse Tana
dc.contributor.authorGursoy, Tugba Ramasli
dc.contributor.authorEmiralioglu, Nagehan
dc.contributor.authorYalcin, Ebru
dc.contributor.authorKiper, Nural
dc.date.accessioned2024-08-04T20:51:40Z
dc.date.available2024-08-04T20:51:40Z
dc.date.issued2022
dc.departmentİnönü Üniversitesien_US
dc.description.abstractBackground 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-up, clinical, growth, treatment, and complications of people with this disease. Methods Age at diagnosis, current age, sex, z-scores of weight, height and body mass index (BMI), neonatal screening results, pulmonary function tests, history of meconium ileus, medications, presence of microorganisms, and follow-up were evaluated and compared to data of people with CF represented in both 2017 and 2019 registry data. Results 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 z-scores of heights and BMI were significantly higher in 2019 (p = 0.002, p =0.039, respectively). Inhaled hypertonic saline, bronchodilator, and azithromycin usages were significantly higher in 2019 (p =0.001, p = 0.001, p = 0.003, respectively). The percent predicted of forced expiratory volume in 1 sec and forced vital capacity were similar in 2017 and 2019 (88% and 89.5%, p = 0.248 and 84.5% and 87%, p =0.332, respectively). Liver diseases and osteoporosis were significantly higher, and pseudo-Bartter syndrome (PBS) was significantly lower in 2019 (p = 0.011, p = 0.001, p = 0.001, respectively). Conclusions The z-scores 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-up. The widespread use of national CF registry system across the country may be beneficial for the follow-up of people with CF.en_US
dc.identifier.doi10.1002/ppul.25852
dc.identifier.endpage1252en_US
dc.identifier.issn8755-6863
dc.identifier.issn1099-0496
dc.identifier.issue5en_US
dc.identifier.pmid35102722en_US
dc.identifier.scopus2-s2.0-85124530692en_US
dc.identifier.scopusqualityQ1en_US
dc.identifier.startpage1245en_US
dc.identifier.urihttps://doi.org/10.1002/ppul.25852
dc.identifier.urihttps://hdl.handle.net/11616/100479
dc.identifier.volume57en_US
dc.identifier.wosWOS:000753941000001en_US
dc.identifier.wosqualityQ2en_US
dc.indekslendigikaynakWeb of Scienceen_US
dc.indekslendigikaynakScopusen_US
dc.indekslendigikaynakPubMeden_US
dc.language.isoenen_US
dc.publisherWileyen_US
dc.relation.ispartofPediatric Pulmonologyen_US
dc.relation.publicationcategoryMakale - Uluslararası Hakemli Dergi - Kurum Öğretim Elemanıen_US
dc.rightsinfo:eu-repo/semantics/closedAccessen_US
dc.subjectchilden_US
dc.subjectcystic fibrosisen_US
dc.subjectregistryen_US
dc.titleThe success of the Cystic Fibrosis Registry of Turkey for improvement of patient careen_US
dc.typeArticleen_US

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