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Data accuracy, consistency and completeness of the national Swiss cystic fibrosis patient registry: Lessons from an ECFSPR data quality project.
Wolf L, Usemann J, Collaud E, Derkenne MF, Fischer R, Hensen M, Hitzler M, Hofer M, Inci D, Irani S, Jahn K, Koutsokera A, Kusche R, Kurowski T, Latzin P, Lin D, Mioranza L, Moeller A, Mornand A, Mueller-Suter D, Murer C, Naehrlich L, Plojoux J, Regamey N, Rodriguez R, Rochat I, Sauty A, Schuurmans M, Semmler M, Trachsel D, Walter AL, Jung A. Wolf L, et al. Among authors: naehrlich l. J Cyst Fibros. 2023 Nov 22:S1569-1993(23)00904-9. doi: 10.1016/j.jcf.2023.08.015. Online ahead of print. J Cyst Fibros. 2023. PMID: 37996316 Free article.
Misdiagnosis of cystic fibrosis: experience from Germany.
Naehrlich L, Bagheri-Behrouzi A; German CF quality assurance group. Naehrlich L, et al. J Cyst Fibros. 2013 Jan;12(1):68-73. doi: 10.1016/j.jcf.2012.06.008. Epub 2012 Jul 24. J Cyst Fibros. 2013. PMID: 22835809 Free article.
Nasal potential difference measurements in diagnosis of cystic fibrosis: an international survey.
Naehrlich L, Ballmann M, Davies J, Derichs N, Gonska T, Hjelte L, van Konigsbruggen-Rietschel S, Leal T, Melotti P, Middleton P, Tümmler B, Vermeulen F, Wilschanski M; ECFS Diagnostic Network Working Group. Naehrlich L, et al. J Cyst Fibros. 2014 Jan;13(1):24-8. doi: 10.1016/j.jcf.2013.08.006. Epub 2013 Sep 7. J Cyst Fibros. 2014. PMID: 24022019 Free article.
Is there evidence for correct diagnosis in cystic fibrosis registries?
Thomas M, Lemonnier L, Gulmans V, Naehrlich L, Vermeulen F, Cuppens H, Castellani C, Norek A, De Boeck K. Thomas M, et al. Among authors: naehrlich l. J Cyst Fibros. 2014 May;13(3):275-80. doi: 10.1016/j.jcf.2013.10.010. Epub 2013 Nov 22. J Cyst Fibros. 2014. PMID: 24274930 Free article.
Changing epidemiology of the respiratory bacteriology of patients with cystic fibrosis-data from the European cystic fibrosis society patient registry.
Hatziagorou E, Orenti A, Drevinek P, Kashirskaya N, Mei-Zahav M, De Boeck K; ECFSPR. Electronic address: ECFS-Patient.Registry@uz.kuleuven.ac.be; ECFSPR. Hatziagorou E, et al. J Cyst Fibros. 2020 May;19(3):376-383. doi: 10.1016/j.jcf.2019.08.006. Epub 2019 Sep 3. J Cyst Fibros. 2020. PMID: 31492646 Free article.
Clinical characteristics of SARS-CoV-2 infection in children with cystic fibrosis: An international observational study.
Bain R, Cosgriff R, Zampoli M, Elbert A, Burgel PR, Carr SB, Castaños C, Colombo C, Corvol H, Faro A, Goss CH, Gutierrez H, Jung A, Kashirskaya N, Marshall BC, Melo J, Mondejar-Lopez P, de Monestrol I, Naehrlich L, Padoan R, Pastor-Vivero MD, Rizvi S, Salvatore M, Filho LVRFDS, Brownlee KG, Haq IJ, Brodlie M. Bain R, et al. Among authors: naehrlich l. J Cyst Fibros. 2021 Jan;20(1):25-30. doi: 10.1016/j.jcf.2020.11.021. Epub 2020 Dec 3. J Cyst Fibros. 2021. PMID: 33309057 Free PMC article.
Survival estimates in European cystic fibrosis patients and the impact of socioeconomic factors: a retrospective registry cohort study.
McKone EF, Ariti C, Jackson A, Zolin A, Carr SB, Orenti A, van Rens JG, Lemonnier L, Macek M Jr, Keogh RH, Naehrlich L; European Cystic Fibrosis Society Patient Registry; ECFSPR contributors list consists of the representatives of the countries whose data is used in this article, and the members of the Scientific Committee who reviewed the initial data application and the final manuscript. Collaborating authors:. McKone EF, et al. Among authors: naehrlich l. Eur Respir J. 2021 Oct 1;58(3):2002288. doi: 10.1183/13993003.02288-2020. Print 2021 Sep. Eur Respir J. 2021. PMID: 33678607 Free article.
Incidence of SARS-CoV-2 in people with cystic fibrosis in Europe between February and June 2020.
Naehrlich L, Orenti A, Dunlevy F, Kasmi I, Harutyunyan S, Pfleger A, Keegan S, Daneau G, Petrova G, Tješić-Drinković D, Yiallouros P, Bilkova A, Olesen HV, Burgel PR, Parulava T, Diamantea F, Párniczky A, McKone EF, Mei-Zahav M, Salvatore M, Colombo C, Aleksejeva E, Malakauskas K, Schlesser M, Fustik S, Turcu O, Zomer-van Ommen D, Wathne AS, Woźniacki Ł, Pereira L, Pop L, Kashirskaya N, Rodić M, Kayserova H, Krivecs U, Mondejar-Lopez P, de Monestrol I, Dogru D, Makukh H, Cosgriff R, van Koningsbruggen-Rietschel S, Jung A; European Cystic Fibrosis COVID project group. Naehrlich L, et al. J Cyst Fibros. 2021 Jul;20(4):566-577. doi: 10.1016/j.jcf.2021.03.017. Epub 2021 Apr 18. J Cyst Fibros. 2021. PMID: 34016559 Free PMC article.
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