Page updated: 28 May 2021

Articles

Naehrlich L, Orentia A, Dunlevy F, …., van Koningsbruggen-Rietschel S, Jung A.,Incidence of SARS-CoV-2 in people with cystic fibrosis in Europe between February and June 2020.  Journal of Cystic Fibrosis 2021; April 17. DOI: https://doi.org/10.1016/j.jcf.2021.03.017
McKone EF, Ariti C, Zolin A, on behalf of the ECFSPR, Survival estimates in European cystic fibrosis patients and the impact of socioeconomic factors: a retrospective registry Cohort study.  https://erj.ersjournals.com/content/early/2021/02/11/13993003.02288-2020.long.
Mckone EF, Jackson AD, Fletcher F, Kirwan L. Dornase alfa and rate of lung function decline in European patients with cystic fibrosis: a retrospective registry cohort study. Journal of Cystic Fibrosis 2020. https://doi.org/10.1016/j.jcf.2020.08.004.
Kotnik Pirš A, Krivec U, Trebušak Podkrajšek K. The c.3140-26A>G Variant of the CFTR Gene in homozygous state causes mild cystic fibrosis Overview of longitudinal clinical data of the patient managed in our centre and review of the literature. Acta Chimica Slovenica 2020;67:666-673. https://dx.doi.org/10.17344/acsi.2019.5677.
Olesen HV, Drevinek P, Gulmans VA, Thomas M, Zolin A, on behalf of the ECFSPR Steering Group. Cystic Fibrosis Related Diabetes in Europe/ Prevalence, Risk Factors and Outcome. Journal of Cystic Fibrosis 2019;19(2):321-327. DOI: https://doi.org/10.1016/j.jcf.2019.10.009.

Hatziagorou E, Orenti A, Drevinek P, Kashirskaya N, Mei-Zahav M, de Boeck K, on behalf of the ECFSPR. Changing Epidemiology of the respiratory bacteriology of patients with cystic fibrosis from the European Cystic Fibrosis Society Patient Registry. Journal of Cystic Fibrosis 2019. https://doi.org/10.1016/j.jcf.2019.08.006

Prinz N, Zolin A, Konrad K, Nährlich L, Laubner K, Olesen HV et al. on behalf of the ECFS Patient Registry and the DPV Registry. Characteristics of Cystic Fibrosis-related diabetes: Data from two different sources, the European Cystic Fibrosis Society Patient registry and German/Austrian diabetes prospective follow-up registry. Pediatric Diabetes 2019;20(3):255-262. https://doi.org/10.1111/pedi.12831​​​​​​​

Zolin A , Bossi A, Cirilli N, Kashirskaya N, Padoan R. Cystic fibrosis mortality in childhood. Data from European Cystic Fibrosis Society Patient Registry. International Journal of Environmental Research and Public Health 2018;15:2020. DOI:10.3390/ijerph15092020Link to Article.
Hurley PD, Oliver S, Mehta A. Creating longitudinal datasets and cleaning existing data identifiers in a cystic fibrosis registry using a novel Bayesian probabilistic approach from astronomy. PLOS ONE 2019;13(7): e0199815. https://doi.org/10.1371/journal.pone.0199815.Link to Article
Kaditis AG, Miligkos M, Bossi A, Colombo C, Hatziagorou E, Kashirskaya N, et al. Effect of allergic bronchopulmonary aspergillosis on FEV1 in children and adolescents with cystic fibrosis: a European Cystic Fibrosis Society Patient Registry analysis. Archives of Disease in Childhood 2017;102(8):742-747. Link to Article
De Boeck K, Zolin A. Year to year change in FEV1 in patients with cystic fibrosis and different mutation classes. Journal of Cystic Fibrosis 2017;16(2):239-245. DOI:10.1016/j.jcf.2016.09.009
Viviani L, Harrison MJ, Zolin A, Haworth CS, Floto RA. Epidemiology of nontuberculous mycobacteria (NTM) amongst individuals with cystic fibrosis (CF). Journal of Cystic Fibrosis 2016;15(5):619–623. Link to Article
Munck A, Alberti C, Colombo C, Kashirskaya N, Ellemunter H, Fotoulaki M et al. on behalf of the CF/Pancreas ESPGHAN Working Group and DIOS Study Group. International prospective study of distal intestinal obstruction syndrome in cystic fibrosis: Associated factors and outcome. Journal of Cystic Fibrosis 2016;15(4):531-539. Link to Article
Burgel P-R,  Bellis G, Olesen HV, Viviani L, Zolin A, Blasi F et al. on behalf of the ERS/ECFS Task Force on The Provision of Care for Adults with Cystic Fibrosis in Europe 2015. Future trends in Cystic Fibrosis demography in 34 European countries. 
European Respiratory Journal 2015;46(1):133-141. Link to Article
De Boeck K, Zolin A, Cuppens H, Olesen HV, Viviani L. The relative frequency of CFTR mutation classes in European patients with cystic fibrosis. 
Journal of Cystic Fibrosis 2014;13(4):403-9. Link to Article
Amstead J, Morris J, Denning DW. Multi-Country Estimate of Different Manifestations of Aspergillosis in Cystic Fibrosis. PLOS ONE 2014;9(6):e98502. Link to Article
Viviani L, Zolin A, Mehta A, Vebert Olesen H.The European Cystic Fibrosis Society Patient Registry: valuable lessons learned on how to sustain a disease registry. Orphanet Journal of Rare Diseases 2014,9:81. Link to Article
Kerem E, Viviani L, Zolin A, Macneill S, Hatziagorou E, Ellemunter H, et al. on behalf of the ECFS Patient Registry Steering Group. Factors associated with FEV1 decline in cystic fibrosis: analysis of the data of the ECFS Patient Registry. European Respiratory Journal 2014;43(1):125-33. Link to Article
VanDevanter DR, Pasta DJ. Evidence of diminished FEV1 and FVC in 6-year-olds followed in the European cystic fibrosis patient registry, 2007-2009. Journal of Cystic Fibrosis 2013;12(6):786-789. Link to Article
Boyle MP, De Boeck K. A new era in the treatment of cystic fibrosis: correction of the underlying CFTR defect. The Lancet Respiratory Medicine 2013(1):158-163. Link to Article
VanDevanter D. Epidemiology of Cystic Fibrosis Lung Disease progression in adolescents. In: Castellani C, Elborn, S Heijerman H, editors. Healthcare Issues and challenges in Adolescents in CF Denmark, ECFS 2012. Link to Article
Boëlle PY, Viviani L, Busson PF, Olesen HV, Ravilly S, Stern M, et al. on behalf of the French CF Modifier Gene Study Investigators and the European CF Registry Working Group. Reference percentiles for FEV(1) and BMI in European children and adults with cystic fibrosis. Orphanet Journal of Rare Diseases 2012;7:64. Link to Article
Mehta G, Macek Jr M, Mehta A, on behalf of the European Registry Working Group. Cystic fibrosis across Europe: EuroCareCF analysis of demographic data from 35 countries. Journal of Cystic Fibrossis 2010;9(Suppl 2):S5-S21. Link to Article
McCormick J, Mehta G, Olesen HV, Viviani L, Macek M, Mehta A, on behalf of the European Registry Working Group. Comparative demographics of the European cystic fibrosis population: a cross-sectional database analysis. Lancet 2010(375):1007-1013. Link to Article