Childhood interstitial lung disease in Turkey: First data from the national registry
Bildiriler > Özet Bildiri
Yazarlar: Halime Nayır Büyükşahin, Nagehan Emiralioğlu, Ayşe Ayzıt Kılınç, Saniye Girit, Ebru Yalçın, Tuğba Şişmanlar Eyüboğlu, Nazan Çobanoğlu, Güzin Cinel, Sevgi Pekcan, Yasemin Gökdemir, Berna Oğuz, Diclehan Orhan, Deniz Doğru, Uğur Özçelik, Azer Kılıç Başkan, Hüseyin Arslan, Haluk Çokuğraş, Zeynep Reyhan Onay, Sinem Can Oksay, Deniz Mavi Tortop, Ayşe Tana Aslan, Handan Kekeç, Fazılcan Zirek, Merve Nur Tekin, Figen GÜLEN, Bahar Girgin Dindar, Sanem Eryılmaz Polat, Salih Uytun, Aslı İmran Yılmaz, Gökçen Ünal, Ela Erdem Eralp, Bülent Karadağ, Melih Hangül, Mehmet Köse, Beste Özsezen, Erkan Çakır, Ayşen Bingöl, Mina Gharibzadeh Hızal, Gökçen KARTAL ÖZTÜRK, Zeynep Seda Uyan, Tuğba Ramaslı Gürsoy, Derya Ufuk Altıntaş, Nural Kiper
Paediatric bronchology, , , Uluslararası, Özet Bildiri, ss OA2505-OA2505
DOI: 10.1183/13993003.congress-2023.oa2505
Özet
Introduction: ChILD are a rare disease group that is difficult to diagnose and classify due to being a heterogeneous group of diseases related to high mortality. Aims and objectives: The chILD registry system in Turkey was established in order to increase awareness of disease in collaboration with centers to increase diagnostic and treatment standards. This would help to create a profile of clinical and demographic characteristics of patients in our country. Here, first results of chILD registry system were presented. Methods: In this prospective cohort study, data were collected using a data‐entry software system. Demographic characteristics, clinical, laboratory, radiological findings, diagnoses and treatment characteristics of the patients were evaluated. Results: 416 patients registered from 19 centers. According to chILD disease categories, of the patients, 82(19.7%) were newborn/infant, 287(68.9%) were in all age groups, and 19(4.9%) were in the group of unknown cause. In the newborn/infant group, the most common presentation findings were tachypnea(47.6%) and shortness of breath(33.3%), while in all age groups, cough(63.4%) and recurrent respiratory tract infections(35.9%). 361(92.6%) patients had at least one chest CT. Bronchoscopy was performed in 153(39.2%), genetic examination was performed in 122(31.3%), lung biopsy was performed in 57(14.6%) patients. 277(71%) of the patients were receiving treatment. 16(4.1%) patients were listed for lung transplantation. 25 (5.4%) of the patients died. Conclusions: Data from the national chILD registry system in its first year shows that physicians need collaboration in the diagnosis and treatment of these patients in this regard.