Current Status of Cystic Fibrosis in Türkiye: Data from the National Registry
OBJECTIVE: The Cystic Fibrosis Registry of Türkiye (CFRT) was established by the Turkish Pediatric Respiratory Diseases and Cystic Fibrosis Society and has provided detailed information on demographic, clinical, genetic, and treatment-related aspects of cystic fibrosis (CF) patients since 2017. We a...
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| Format: | Article |
| Language: | English |
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Galenos
2025-09-01
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| Series: | Thoracic Research and Practice |
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| Online Access: | https://thoracrespract.org/articles/current-status-of-cystic-fibrosis-in-turkiye-data-from-the-national-registry/doi/ThoracResPract.2025.2025-1-11 |
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| author | Dilber Ademhan Tural Tuğba Şişmanlar Eyüboğlu Güzin Cinel Erkan Çakır Sevgi Pekcan Uğur Özçelik Nagehan Emiralioğlu Ordukaya Ebru Yalçın Halime Nayır Büyükşahin Mahir Serbes Derya Ufuk Altıntaş Mina Hizal Gaye İnal Özlem Keskin Sanem Eryılmaz Polat Suat Savaş Fatma Nur Ayman Meltem Erdal Havva İpek Demir Hasan Yüksel Demet Polat Uluğ Ali Özdemir Gökçen Dilşa Tuğcu Ezgi Demirdöğen Merve Korkmaz Yakup Canıtez Handan Kekeç Ayşe Tana Aslan Koray Harmancı Velat Şen Hadice Selimoğlu Şen Ayşe Ayzıt Kılınç Azer Kılıç Başkan Berrak Öztosun Ebru Damadoğlu Oğuz Karcıoğlu Gökçen Kartal Öztürk Figen Gülen Fazılcan Zirek Ece Ocak Nilay Baş İkizoğlu Eylül Pınar Çakır Erdem Topal Mehmet Kılıç Gönül Çaltepe Pelin Asfuroğlu Nazan Çobanoğlu Melih Hangül Erdi Çağrı Dağdelen Mehmet Köse Ali Ersoy Ayşen Bingöl Abdurrahman Erdem Başaran Beste Özsezen Tuğba Ramaslı Gürsoy Pervin Korkmaz Zeynep Gökçe Gayretli Aydın Deniz Doğru |
| author_facet | Dilber Ademhan Tural Tuğba Şişmanlar Eyüboğlu Güzin Cinel Erkan Çakır Sevgi Pekcan Uğur Özçelik Nagehan Emiralioğlu Ordukaya Ebru Yalçın Halime Nayır Büyükşahin Mahir Serbes Derya Ufuk Altıntaş Mina Hizal Gaye İnal Özlem Keskin Sanem Eryılmaz Polat Suat Savaş Fatma Nur Ayman Meltem Erdal Havva İpek Demir Hasan Yüksel Demet Polat Uluğ Ali Özdemir Gökçen Dilşa Tuğcu Ezgi Demirdöğen Merve Korkmaz Yakup Canıtez Handan Kekeç Ayşe Tana Aslan Koray Harmancı Velat Şen Hadice Selimoğlu Şen Ayşe Ayzıt Kılınç Azer Kılıç Başkan Berrak Öztosun Ebru Damadoğlu Oğuz Karcıoğlu Gökçen Kartal Öztürk Figen Gülen Fazılcan Zirek Ece Ocak Nilay Baş İkizoğlu Eylül Pınar Çakır Erdem Topal Mehmet Kılıç Gönül Çaltepe Pelin Asfuroğlu Nazan Çobanoğlu Melih Hangül Erdi Çağrı Dağdelen Mehmet Köse Ali Ersoy Ayşen Bingöl Abdurrahman Erdem Başaran Beste Özsezen Tuğba Ramaslı Gürsoy Pervin Korkmaz Zeynep Gökçe Gayretli Aydın Deniz Doğru |
| author_sort | Dilber Ademhan Tural |
| collection | DOAJ |
| description | OBJECTIVE: The Cystic Fibrosis Registry of Türkiye (CFRT) was established by the Turkish Pediatric Respiratory Diseases and Cystic Fibrosis Society and has provided detailed information on demographic, clinical, genetic, and treatment-related aspects of cystic fibrosis (CF) patients since 2017. We aimed to describe the current status of CF in Türkiye using CFRT’s 2023 annual data.
MATERIAL AND METHODS: Demographic, clinical, and treatment data were taken from CFRT’s 2023 record.
RESULTS: In 2023, 2,258 patients from 34 centers were recorded. The median age of patients was 9.1 years, and 46.9% were female, with a median age at diagnosis of 0.3 years. Only 14.9% of the patients were older than 18 years. Genetic analyses were completed in 97.3% of patients. The most common variant, F508del, had a total variant frequency of 22.1%. The median percent predicted FEV1 and FVC were 88.0 and 94.0 in those aged 6-17 years 71.0 and 84.0 in those aged ≥18 years, respectively. The median values of body mass index z-scores were -0.5, and -0.5 for patients 2-18 and older than 18 years, respectively. Chronic colonization with Pseudomonas aeruginosa was present in 17.2% of the patients. Most patients used inhaled recombinant human DNase (87.1%) and oral pancreatic enzyme replacement treatment (83.0%). CF transmembrane conductance regulator (CFTR) modulators were used by 15.9% of patients. Over the year, 24 patients died, with a median age at death of 13.3 years.
CONCLUSION: The CFRT report provides a valuable resource showing the clinical and laboratory data of patients with CF in the country. |
| format | Article |
| id | doaj-art-de5dfe06fc164b1b914b419ae33ca7ee |
| institution | Kabale University |
| issn | 2979-9139 |
| language | English |
| publishDate | 2025-09-01 |
| publisher | Galenos |
| record_format | Article |
| series | Thoracic Research and Practice |
| spelling | doaj-art-de5dfe06fc164b1b914b419ae33ca7ee2025-08-20T04:03:26ZengGalenosThoracic Research and Practice2979-91392025-09-0126523824710.4274/ThoracResPract.2025.2025-1-11Current Status of Cystic Fibrosis in Türkiye: Data from the National RegistryDilber Ademhan Tural0https://orcid.org/0000-0002-0334-6336Tuğba Şişmanlar Eyüboğlu1https://orcid.org/0000-0001-7284-4999Güzin Cinel2https://orcid.org/0000-0002-6209-196XErkan Çakır3https://orcid.org/0000-0002-1438-7854Sevgi Pekcan4https://orcid.org/0000-0002-8059-902XUğur Özçelik5https://orcid.org/0000-0003-1587-5216Nagehan Emiralioğlu Ordukaya6https://orcid.org/0000-0002-1405-8401Ebru Yalçın7https://orcid.org/0000-0002-7325-1981Halime Nayır Büyükşahin8https://orcid.org/0000-0002-6909-7993Mahir Serbes9https://orcid.org/0000-0001-6422-2639Derya Ufuk Altıntaş10https://orcid.org/0000-0003-2090-5248Mina Hizal11https://orcid.org/0000-0002-6922-4948Gaye İnal12https://orcid.org/0000-0002-1019-7332Özlem Keskin13https://orcid.org/0000-0002-3061-7832Sanem Eryılmaz Polat14https://orcid.org/0000-0003-2309-7952Suat Savaş15https://orcid.org/0000-0002-2733-7194Fatma Nur Ayman16https://orcid.org/0000-0002-8252-7775Meltem Erdal17https://orcid.org/0000-0002-7507-0770Havva İpek Demir18https://orcid.org/0000-0002-7717-3319Hasan Yüksel19https://orcid.org/0000-0001-9577-8445Demet Polat Uluğ20https://orcid.org/0000-0002-5514-5632Ali Özdemir21https://orcid.org/0000-0001-7340-0409Gökçen Dilşa Tuğcu22https://orcid.org/0000-0002-9804-1200Ezgi Demirdöğen23https://orcid.org/0000-0002-7400-9089Merve Korkmaz24https://orcid.org/0009-0003-8830-3558Yakup Canıtez25https://orcid.org/0000-0001-8929-679XHandan Kekeç26https://orcid.org/0000-0001-8770-0939Ayşe Tana Aslan27https://orcid.org/0000-0002-5360-8517Koray Harmancı28https://orcid.org/0000-0002-8494-648XVelat Şen29https://orcid.org/0000-0002-9232-5982Hadice Selimoğlu Şen30https://orcid.org/0000-0002-2597-6646Ayşe Ayzıt Kılınç31https://orcid.org/0000-0002-2879-8910Azer Kılıç Başkan32https://orcid.org/0000-0002-7600-7909Berrak Öztosun33https://orcid.org/0000-0001-5649-8045Ebru Damadoğlu34https://orcid.org/0000-0001-6250-2100Oğuz Karcıoğlu35https://orcid.org/0000-0002-6071-0851Gökçen Kartal Öztürk36https://orcid.org/0000-0002-0793-9710Figen Gülen37https://orcid.org/0000-0002-5431-3913Fazılcan Zirek38https://orcid.org/0000-0002-2146-9284Ece Ocak39https://orcid.org/0000-0002-4466-0620Nilay Baş İkizoğlu40https://orcid.org/0000-0002-5102-0031Eylül Pınar Çakır41https://orcid.org/0000-0003-2067-3256Erdem Topal42https://orcid.org/0000-0002-4439-2689Mehmet Kılıç43https://orcid.org/0000-0002-1089-1316Gönül Çaltepe44https://orcid.org/0000-0001-8525-6352Pelin Asfuroğlu45https://orcid.org/0000-0002-9575-3982Nazan Çobanoğlu46https://orcid.org/0000-0002-3686-2927Melih Hangül47https://orcid.org/0000-0001-6226-0340Erdi Çağrı Dağdelen48https://orcid.org/0000-0001-6718-0497Mehmet Köse49https://orcid.org/0000-0002-3003-918XAli Ersoy50https://orcid.org/0000-0002-7967-6577Ayşen Bingöl51https://orcid.org/0000-0002-0886-3332Abdurrahman Erdem Başaran52https://orcid.org/0000-0002-9092-6936Beste Özsezen53https://orcid.org/0000-0002-0052-8361Tuğba Ramaslı Gürsoy54https://orcid.org/0000-0002-7064-7585Pervin Korkmaz55https://orcid.org/0000-0002-6913-9970Zeynep Gökçe Gayretli Aydın56https://orcid.org/0000-0003-4291-1067Deniz Doğru57https://orcid.org/0000-0001-9931-9473Department of Pediatric Pulmonology, Ankara Yıldırım Beyazıt University Faculty of Medicine, Ankara, TürkiyeDepartment of Pediatric Pulmonology, Gazi University Faculty of Medicine, Ankara, TürkiyeDepartment of Pediatric Pulmonology, Ankara Yıldırım Beyazıt University Faculty of Medicine, Ankara, TürkiyeClinic of Pediatric Pulmonology, İstinye University, Liv Hospital, İstanbul, TürkiyeDepartment of Pediatric Pulmonology, Necmettin Erbakan University Faculty of Medicine, Konya, TürkiyeDepartment of Pediatric Pulmonology, Hacettepe University Faculty of Medicine, Ankara, TürkiyeDepartment of Pediatric Pulmonology, Hacettepe University Faculty of Medicine, Ankara, TürkiyeDepartment of Pediatric Pulmonology, Hacettepe University Faculty of Medicine, Ankara, TürkiyeClinic of Pediatric Pulmonology, Mardin Training and Research Hospital, Mardin, TürkiyeDepartment of Pediatric Allergy and Immunology, Çukurova University Faculty of Medicine, Adana, TürkiyeDepartment of Pediatric Allergy and Immunology, Çukurova University Faculty of Medicine, Adana, TürkiyeClinic of Pediatric Pulmonology, University of Health Sciences Türkiye, Ankara Training and Research Hospital, Ankara, TürkiyeDepartment of Pediatric Allergy and Immunology, Gaziantep University Faculty of Medicine, Gaziantep, TürkiyeDepartment of Pediatric Allergy and Immunology, Gaziantep University Faculty of Medicine, Gaziantep, TürkiyeClinic of Pediatric Pulmonology, Ankara Bilkent City Hospital, Ankara, TürkiyeDepartment of Pediatric Pulmonology, Necmettin Erbakan University Faculty of Medicine, Konya, TürkiyeDepartment of Pediatric Pulmonology, Necmettin Erbakan University Faculty of Medicine, Konya, TürkiyeDepartment of Pediatric Pulmonology, Hacettepe University Faculty of Medicine, Ankara, TürkiyeDepartment of Pediatric Pulmonology, Hacettepe University Faculty of Medicine, Ankara, TürkiyeDepartment of Pediatric Pulmonology, Manisa Celal Bayar University Faculty of Medicine, Manisa, TürkiyeClinic of Pediatric Pulmonology, University of Health Sciences Türkiye, Mersin City Hospital, Mersin, TürkiyeClinic of Pediatric Pulmonology, University of Health Sciences Türkiye, Mersin City Hospital, Mersin, TürkiyeClinic of Pediatric Pulmonology, Ankara Bilkent City Hospital, Ankara, TürkiyeDepartment of Pulmonology, Bursa Uludağ University Faculty of Medicine, Bursa, TürkiyeDepartment of Pediatric Pulmonology, Bursa Uludağ University Faculty of Medicine, Bursa, TürkiyeDepartment of Pediatric Pulmonology, Bursa Uludağ University Faculty of Medicine, Bursa, TürkiyeDepartment of Pediatric Pulmonology, Gazi University Faculty of Medicine, Ankara, TürkiyeDepartment of Pediatric Pulmonology, Gazi University Faculty of Medicine, Ankara, TürkiyeDepartment of Pediatric Allergy and Immunology, Eskişehir Osmangazi University Faculty of Medicine, Eskişehir, TürkiyeDepartment of Pediatric Pulmonology, Dicle University Faculty of Medicine, Diyarbakır, TürkiyeDepartment of Pediatric Pulmonology, Dicle University Faculty of Medicine, Diyarbakır, TürkiyeDepartment of Pediatric Pulmonology, İstanbul University-Cerrahpaşa, Cerrahpaşa Faculty of Medicine, İstanbul, TürkiyeDepartment of Pediatric Pulmonology, İstanbul University-Cerrahpaşa, Cerrahpaşa Faculty of Medicine, İstanbul, TürkiyeDepartment of Pediatric Pulmonology, İstanbul University-Cerrahpaşa, Cerrahpaşa Faculty of Medicine, İstanbul, TürkiyeDepartment of Pulmonology, Hacettepe University Faculty of Medicine, Ankara, TürkiyeDepartment of Pulmonology, Hacettepe University Faculty of Medicine, Ankara, TürkiyeDepartment of Pediatric Pulmonology, Ege University Faculty of Medicine, İzmir, TürkiyeDepartment of Pediatric Pulmonology, Ege University Faculty of Medicine, İzmir, TürkiyeClinic of Pediatric Pulmonology, University of Health Sciences Türkiye, Samsun Training and Research Hospital, Samsun, TürkiyeClinic of Pediatric Pulmonology, University of Health Sciences Türkiye, İzmir City Hospital, İzmir, TürkiyeDepartment of Pediatric Pulmonology, İstanbul University, İstanbul Faculty of Medicine, İstanbul, TürkiyeClinic of Pediatric Pulmonology, University of Health Sciences Türkiye, Bursa City Hospital, Bursa, TürkiyeDepartment of Pediatric Allergy and Immunology, İnönü University Faculty of Medicine, Malatya, TürkiyeDepartment of Pediatric Allergy and Immunology, Fırat University Faculty of Medicine, Elazığ, TürkiyeDepartment of Pediatric Gastroenterology, Ondokuz Mayıs University Faculty of Medicine, Samsun, TürkiyeClinic of Pediatric Pulmonology, University of Health Sciences Türkiye, Gaziantep City Hospital, Gaziantep, TürkiyeDepartment of Pediatric Pulmonology, Ankara University Faculty of Medicine, Ankara, TürkiyeClinic of Pediatric Pulmonology, University of Health Sciences Türkiye, Adana City Training and Research Hospital, Adana, TürkiyeClinic of Pediatric Pulmonology, University of Health Sciences Türkiye, Adana City Training and Research Hospital, Adana, TürkiyeDepartment of Pediatric Pulmonology, Erciyes University Faculty of Medicine, Kayseri, TürkiyeDepartment of Pediatric Pulmonology, Erciyes University Faculty of Medicine, Kayseri, TürkiyeDepartment of Pediatric Pulmonology, Akdeniz University Faculty of Medicine, Antalya, TürkiyeDepartment of Pediatric Pulmonology, Akdeniz University Faculty of Medicine, Antalya, TürkiyeClinic of Pediatric Pulmonology, Şanlıurfa Training and Research Hospital, Şanlıurfa, TürkiyeClinic of Pediatric Pulmonology, University of Health Sciences Türkiye, Van Training and Research Hospital, Van, TürkiyeDepartment of Pulmonology, Ege University Faculty of Medicine, İzmir, TürkiyeDepartment of Pediatric Infectious Diseases, Karadeniz Technical University Faculty of Medicine, Trabzon, TürkiyeDepartment of Pediatric Pulmonology, Hacettepe University Faculty of Medicine, Ankara, TürkiyeOBJECTIVE: The Cystic Fibrosis Registry of Türkiye (CFRT) was established by the Turkish Pediatric Respiratory Diseases and Cystic Fibrosis Society and has provided detailed information on demographic, clinical, genetic, and treatment-related aspects of cystic fibrosis (CF) patients since 2017. We aimed to describe the current status of CF in Türkiye using CFRT’s 2023 annual data. MATERIAL AND METHODS: Demographic, clinical, and treatment data were taken from CFRT’s 2023 record. RESULTS: In 2023, 2,258 patients from 34 centers were recorded. The median age of patients was 9.1 years, and 46.9% were female, with a median age at diagnosis of 0.3 years. Only 14.9% of the patients were older than 18 years. Genetic analyses were completed in 97.3% of patients. The most common variant, F508del, had a total variant frequency of 22.1%. The median percent predicted FEV1 and FVC were 88.0 and 94.0 in those aged 6-17 years 71.0 and 84.0 in those aged ≥18 years, respectively. The median values of body mass index z-scores were -0.5, and -0.5 for patients 2-18 and older than 18 years, respectively. Chronic colonization with Pseudomonas aeruginosa was present in 17.2% of the patients. Most patients used inhaled recombinant human DNase (87.1%) and oral pancreatic enzyme replacement treatment (83.0%). CF transmembrane conductance regulator (CFTR) modulators were used by 15.9% of patients. Over the year, 24 patients died, with a median age at death of 13.3 years. CONCLUSION: The CFRT report provides a valuable resource showing the clinical and laboratory data of patients with CF in the country.https://thoracrespract.org/articles/current-status-of-cystic-fibrosis-in-turkiye-data-from-the-national-registry/doi/ThoracResPract.2025.2025-1-11cystic fibrosiscystic fibrosis registry of türkiyeannual data |
| spellingShingle | Dilber Ademhan Tural Tuğba Şişmanlar Eyüboğlu Güzin Cinel Erkan Çakır Sevgi Pekcan Uğur Özçelik Nagehan Emiralioğlu Ordukaya Ebru Yalçın Halime Nayır Büyükşahin Mahir Serbes Derya Ufuk Altıntaş Mina Hizal Gaye İnal Özlem Keskin Sanem Eryılmaz Polat Suat Savaş Fatma Nur Ayman Meltem Erdal Havva İpek Demir Hasan Yüksel Demet Polat Uluğ Ali Özdemir Gökçen Dilşa Tuğcu Ezgi Demirdöğen Merve Korkmaz Yakup Canıtez Handan Kekeç Ayşe Tana Aslan Koray Harmancı Velat Şen Hadice Selimoğlu Şen Ayşe Ayzıt Kılınç Azer Kılıç Başkan Berrak Öztosun Ebru Damadoğlu Oğuz Karcıoğlu Gökçen Kartal Öztürk Figen Gülen Fazılcan Zirek Ece Ocak Nilay Baş İkizoğlu Eylül Pınar Çakır Erdem Topal Mehmet Kılıç Gönül Çaltepe Pelin Asfuroğlu Nazan Çobanoğlu Melih Hangül Erdi Çağrı Dağdelen Mehmet Köse Ali Ersoy Ayşen Bingöl Abdurrahman Erdem Başaran Beste Özsezen Tuğba Ramaslı Gürsoy Pervin Korkmaz Zeynep Gökçe Gayretli Aydın Deniz Doğru Current Status of Cystic Fibrosis in Türkiye: Data from the National Registry Thoracic Research and Practice cystic fibrosis cystic fibrosis registry of türkiye annual data |
| title | Current Status of Cystic Fibrosis in Türkiye: Data from the National Registry |
| title_full | Current Status of Cystic Fibrosis in Türkiye: Data from the National Registry |
| title_fullStr | Current Status of Cystic Fibrosis in Türkiye: Data from the National Registry |
| title_full_unstemmed | Current Status of Cystic Fibrosis in Türkiye: Data from the National Registry |
| title_short | Current Status of Cystic Fibrosis in Türkiye: Data from the National Registry |
| title_sort | current status of cystic fibrosis in turkiye data from the national registry |
| topic | cystic fibrosis cystic fibrosis registry of türkiye annual data |
| url | https://thoracrespract.org/articles/current-status-of-cystic-fibrosis-in-turkiye-data-from-the-national-registry/doi/ThoracResPract.2025.2025-1-11 |
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