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

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dc.contributor.authorAsfuroglu P.
dc.contributor.authorSismanlar Eyuboglu T.
dc.contributor.authorAslan A.T.
dc.contributor.authorGursoy T.R.
dc.contributor.authorEmiralioglu N.
dc.contributor.authorYalcin E.
dc.contributor.authorKiper N.
dc.contributor.authorSen V.
dc.contributor.authorSen H.S.
dc.contributor.authorAltintas D.U.
dc.contributor.authorOzcan D.
dc.contributor.authorKilinc A.A.
dc.contributor.authorCokugras H.
dc.contributor.authorBaskan A.K.
dc.contributor.authorYazan H.
dc.contributor.authorErenberk U.
dc.contributor.authorDogan G.
dc.contributor.authorUnal G.
dc.contributor.authorYilmaz A.I.
dc.contributor.authorKeskin O.
dc.contributor.authorArik E.
dc.contributor.authorKucukosmanoglu E.
dc.contributor.authorIrmak I.
dc.contributor.authorDamadoglu E.
dc.contributor.authorOzturk G.K.
dc.contributor.authorGulen F.
dc.contributor.authorBasaran A.E.
dc.contributor.authorBingol A.
dc.contributor.authorCekic S.
dc.contributor.authorSapan N.
dc.contributor.authorKilic G.
dc.contributor.authorHarmanci K.
dc.contributor.authorKose M.
dc.contributor.authorOzdemir A.
dc.contributor.authorTugcu G.D.
dc.contributor.authorPolat S.E.
dc.contributor.authorHangul M.
dc.contributor.authorOzcan G.
dc.contributor.authorAydin Z.G.G.
dc.contributor.authorYuksel H.
dc.contributor.authorTopal E.
dc.contributor.authorOzdogan S.
dc.contributor.authorCaltepe G.
dc.contributor.authorSuleyman A.
dc.contributor.authorCan D.
dc.contributor.authorEkren P.K.
dc.contributor.authorBal C.M.
dc.contributor.authorKilic M.
dc.contributor.authorCinel G.
dc.contributor.authorCobanoglu N.
dc.contributor.authorPekcan S.
dc.contributor.authorCakir E.
dc.contributor.authorOzcelik U.
dc.contributor.authorDogru D.
dc.date.accessioned2024-07-22T08:04:30Z
dc.date.available2024-07-22T08:04:30Z
dc.date.issued2022
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. © 2022 Wiley Periodicals LLC.
dc.identifier.DOI-ID10.1002/ppul.25852
dc.identifier.issn87556863
dc.identifier.urihttp://akademikarsiv.cbu.edu.tr:4000/handle/123456789/12730
dc.language.isoEnglish
dc.publisherJohn Wiley and Sons Inc
dc.subjectBartter Syndrome
dc.subjectCystic Fibrosis
dc.subjectCystic Fibrosis Transmembrane Conductance Regulator
dc.subjectFemale
dc.subjectHumans
dc.subjectInfant, Newborn
dc.subjectMale
dc.subjectPatient Care
dc.subjectRegistries
dc.subjectTurkey
dc.subjectazithromycin
dc.subjectbronchodilating agent
dc.subjectchloride
dc.subjectsodium
dc.subjectsodium chloride
dc.subjectursodeoxycholic acid
dc.subjectcystic fibrosis transmembrane conductance regulator
dc.subjectArticle
dc.subjectaspergillosis
dc.subjectBartter syndrome
dc.subjectbody height
dc.subjectbody mass
dc.subjectbody weight
dc.subjectchild
dc.subjectcomorbidity assessment
dc.subjectcomparative study
dc.subjectcystic fibrosis
dc.subjectdiabetes mellitus
dc.subjectenzyme replacement
dc.subjectfemale
dc.subjectfollow up
dc.subjectforced expiratory volume
dc.subjectforced vital capacity
dc.subjecthemoptysis
dc.subjecthuman
dc.subjectimmunoreactivity
dc.subjectincidence
dc.subjectinflammatory cell
dc.subjectliver disease
dc.subjectlung function
dc.subjectlung function test
dc.subjectmajor clinical study
dc.subjectmale
dc.subjectmeconium ileus
dc.subjectnewborn screening
dc.subjectosteoporosis
dc.subjectpatient care
dc.subjectretrospective study
dc.subjectscreening test
dc.subjectTurkey (republic)
dc.subjectBartter syndrome
dc.subjectcomplication
dc.subjectcystic fibrosis
dc.subjectnewborn
dc.subjectpatient care
dc.subjectregister
dc.subjectturkey (bird)
dc.titleThe success of the Cystic Fibrosis Registry of Turkey for improvement of patient care
dc.typeArticle

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