Sermet-Gaudelus, I., Orenti, A., Hatziagorou, E., Bakkeheim, E., Naehrlich, L., & Kerem, E.
Health Inequity in People with Cystic Fibrosis: Can We Close the Gap? Annals of the American Thoracic Society
10.1513/AnnalsATS.202501-052O
Burgel, P. R., Orenti, A., Cromwell, E., Macek, M., Gutierrez, H. H., Karadag, B., ... & Stephenson, A. L.
Global prevalence of CFTR variants with respect to their responsiveness to elexacaftor-tezacaftor-ivacaftor. Journal of cystic fibrosis: official journal of the European Cystic Fibrosis Society
S1569-1993(25)02491-9
Pollak, M., Gambazza, S., Orenti, A., Prais, D., Kerem, E., Mei-Zahav, M., & ECFSPR Steering Group
Factors associated with sustained Pseudomonas aeruginosa infection following elexacaftor/tezacaftor/ivacaftor treatment: Real-world data from the European cystic fibrosis society patient registry.
S1569-1993(25)01579-6
Pollak, M., Gambazza, S., Orenti, A., de Rose, V., Prais, D., Kerem, E., & Mei Zahav, M.
Respiratory infections after elexacaftor/tezacaftor/ivacaftor treatment in people with cystic fibrosis: analysis of the European Cystic Fibrosis Society Patient Registry.
ERJ Open Research, 01248–02024.
Mei-Zahav, M., Dotan, M., Annicchiarico, L., Orenti, A., & Prais, D.
Methicillin-Resistant Staphylococcus Aureus and Pulmonary Outcome in People with Cystic Fibrosis: A European Cystic Fibrosis Patient Registry Data Analysis.
ERJ Open Research, 01284–02024.
Mei-Zahav, M., Orenti, A., Jung, A., & Kerem, E.
Variability in disease severity among cystic fibrosis patients carrying residual-function variants: data from the European Cystic Fibrosis Society Patient Registry.
ERJ open research, 11(1), 00587-2024.
Semenchuk, J., Naito, Y., Charman, S. C., Carr, S. B., Cheng, S. Y., Marshall, B. C., Faro, A., Elbert, A., Gutierrez, H. H., Goss, C. H., Karadag, B., Burgel, P. R., Colombo, C., Salvatore, M., Padoan, R., Daneau, G., Harutyunyan, S., Kashirskaya, N., Kirwan, L., Middleton, P. G., … Global CF Registry Collaboration.
Impact of COVID-19 infection on lung function and nutritional status amongst individuals with cystic fibrosis: A global cohort study.
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 23(5), 815–822.
Kim, C., Higgins, M., Liu, L., Volkova, N., Zolin, A., Naehrlich, L., & ECFSPR Study Group.
Effectiveness of lumacaftor/ivacaftor initiation in children with cystic fibrosis aged 2 through 5 years on disease progression: Interim results from an ongoing registry-based study.
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 23(3), 436–442.
Kerem, E., Orenti, A., Adamoli, A., Hatziagorou, E., Naehrlich, L., Sermet-Gaudelus, I., & and the ECFS Patient Registry Steering Group.
Cystic fibrosis in Europe: improved lung function and longevity - reasons for cautious optimism, but challenges remain.
The European respiratory journal, 63(3), 2301241.
Bradbury, J. D., Chesshyre, E., Orenti, A., Jung, A., Warris, A., & European Cystic Fibrosis COVID project group.
A multinational report on SARS-CoV-2 infection outcomes in people with CF and Aspergillus infection or ABPA.
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 23(2), 354–363.
Orenti, A., Pranke, I., Faucon, C., Varilh, J., Hatton, A., Golec, A., Dehillotte, C., Durieu, I., Reix, P., Burgel, P. R., Grenet, D., Tasset, C., Gachelin, E., Perisson, C., Lepissier, A., Dreano, E., Tondelier, D., Chevalier, B., Weiss, L., Kiefer, S., … ECFSPR Steering group.
Nonsense mutations accelerate lung disease and decrease survival of cystic fibrosis children.
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 22(6), 1070–1079.
Gambazza, S., Orenti, A., Pizzamiglio, G., Zolin, A., Colombo, C., Laquintana, D., Ambrogi, F., & ECFSPR.
Association of Oxygen Therapy with the Natural Disease Progression of Cystic Fibrosis: A Multi-State Model of the European Cystic Fibrosis Society Patient Registry.
Therapeutics and clinical risk management, 19, 255–267.
Hatziagorou, E., Fieuws, S., Orenti, A., Naehrlich, L., Krivec, U., Mei-Zahav, M., Jung, A., De Boeck, K., ECFSPR Collaborative Group, & ECFSPR
Collaborative Group. Risk factors for forced expiratory volume in 1 s decline in European patients with cystic fibrosis: data from the European Cystic Fibrosis Society Patient Registry.
ERJ open research, 9(3), 00449-2022.
Kerem, E., Orenti, A., Zolin, A., Annicchiarico, L., Drevinek, P., & ECFSPR with the list of contributing authors.
Clinical outcomes associated with Achromobacter species infection in people with cystic fibrosis.
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 22(2), 334–343.
Orenti, A., Mei-Zahav, M., Boracchi, P., Lindblad, A., Shteinberg, M., & ECFSPR Scientific Committee.
Prevalence, trends and outcomes of long-term inhaled antibiotic treatment in people with cystic fibrosis without chronic Pseudomonas aeruginosa infection - A European cystic fibrosis patient registry data analysis.
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 22(1), 103–111.
Mei Zahav, M., Orenti, A., Jung, A., Hatziagorou, E., Olesen, H. V., Kerem, E., & ECFSPR with the list of contributing authors.
Disease severity of people with cystic fibrosis carrying residual function mutations: Data from the ECFS Patient Registry.
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 22(2), 234–247.
Duursma, S. S., Verkade, H. J., & Bodewes, F. A. J. A.
Heterozygous People With Cystic Fibrosis Harboring One F508del CFTR Gene Mutation.
Gastroenterology, 163(4), 1098–1100.
Mondejar-Lopez, P., Zolin, A., Garcia-Marcos, P. W., Pastor-Vivero, M. D., Rosa-Silvestre, M., de Asis Sanchez-Martinez, F., Salvatore, D., Cimino, G., Majo, F., Sole-Jover, A., Asensio de la Cruz, O., Calderazzo, M. A., Pizzamiglio, G., Castillo-Corullon, S., Alvarez-Fernandez, A., Gartner, S., Padoan, R., Carnovale, V., Salvatore, M., Moya-Quiles, M. R., … Sanchez-Solis, M.
Geographic distribution and phenotype of European people with cystic fibrosis carrying A1006E mutation.
Respiratory medicine, 192, 106736.
Jung, A., Orenti, A., Dunlevy, F., Aleksejeva, E., Bakkeheim, E., Bobrovnichy, V., Carr, S. B., Colombo, C., Corvol, H., Cosgriff, R., Daneau, G., Dogru, D., Drevinek, P., Vukic, A. D., Fajac, I., Fox, A., Fustik, S., Gulmans, V., Harutyunyan, S., Hatziagorou, E., … Naehrlich, L.
Factors for severe outcomes following SARS-CoV-2 infection in people with cystic fibrosis in Europe.
ERJ open research, 7(4), 00411-2021.
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, H. V., Burgel, P. R., Parulava, T., Diamantea, F., Párniczky, A., McKone, E. F., Mei-Zahav, M., Salvatore, M.
European Cystic Fibrosis COVID project group. Incidence of SARS-CoV-2 in people with cystic fibrosis in Europe between February and June 2020.
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 20(4), 566–577.
McKone, E. F., Ariti, C., Jackson, A., Zolin, A., Carr, S. B., Orenti, A., van Rens, J. G., Lemonnier, L., Macek, M., Jr, Keogh, R. H., 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.
Survival estimates in European cystic fibrosis patients and the impact of socioeconomic factors: a retrospective registry cohort study.
The European respiratory journal, 58(3), 2002288.
McKone, E. F., Jackson, A. D., Fletcher, G., & 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 : official journal of the European Cystic Fibrosis Society, 20(3), 552–554.
Ana Kotnik Pirš, Uroš Krivec, Katarina Trebušak Podkrajšek. 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 CF Center and Review of the Literature.
Acta Chim. Slov. 67, 666–673.
Olesen, H. V., Drevinek, P., Gulmans, V. A., Hatziagorou, E., Jung, A., Mei-Zahav, M., Stojnic, N., Thomas, M., Zolin, A., & ECFSPR Steering Group.
Cystic fibrosis related diabetes in Europe: Prevalence, risk factors and outcome; Olesen et al.
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 19(2), 321–327.
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.
Changing epidemiology of the respiratory bacteriology of patients with cystic fibrosis-data from the European cystic fibrosis society patient registry.
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 19(3), 376–383.
Prinz, N., Zolin, A., Konrad, K., Nährlich, L., Laubner, K., Olesen, H. V., Bauer, M., Jung, A., Frischer, T., Holl, R. W., & 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, 20(3), 255–262.
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, 15(9), 2020.
Hurley, P. D., 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, 13(7), e0199815.
Kaditis, A. G., Miligkos, M., Bossi, A., Colombo, C., Hatziagorou, E., Kashirskaya, N., de Monestrol, I., Thomas, M., Mei-Zahav, M., Chrousos, G., & Zolin, A.
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, 102(8), 742–747.
De Boeck, K., & Zolin, A.
Year to year change in FEV1 in patients with cystic fibrosis and different mutation classes.
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 16(2), 239–245.
Viviani, L., Harrison, M. J., Zolin, A., Haworth, C. S., & Floto, R. A.
Epidemiology of nontuberculous mycobacteria (NTM) amongst individuals with cystic fibrosis (CF).
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 15(5), 619–623.
Munck, A., Alberti, C., Colombo, C., Kashirskaya, N., Ellemunter, H., Fotoulaki, M., Houwen, R., Robberecht, E., Boizeau, P., Wilschanski, M., & 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 : official journal of the European Cystic Fibrosis Society, 15(4), 531–539.
Burgel, P. R., Bellis, G., Olesen, H. V., Viviani, L., Zolin, A., Blasi, F., Elborn, J. S., & ERS/ECFS Task Force on Provision of Care for Adults with Cystic Fibrosis in Europe.
Future trends in cystic fibrosis demography in 34 European countries.
The European respiratory journal, 46(1), 133–141.
De Boeck, K., Zolin, A., Cuppens, H., Olesen, H. V., & Viviani, L.
The relative frequency of CFTR mutation classes in European patients with cystic fibrosis.
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 13(4), 403–409.
Armstead, J., Morris, J., & Denning, D. W.
Multi-country estimate of different manifestations of aspergillosis in cystic fibrosis.
PloS one, 9(6), e98502.
Viviani, L., Zolin, A., Mehta, A., & Olesen, H. V.
The European Cystic Fibrosis Society Patient Registry: valuable lessons learned on how to sustain a disease registry.
Orphanet journal of rare diseases, 9, 81.
Kerem, E., Viviani, L., Zolin, A., MacNeill, S., Hatziagorou, E., Ellemunter, H., Drevinek, P., Gulmans, V., Krivec, U., Olesen, H., & ECFS Patient Registry Steering Group.
Factors associated with FEV1 decline in cystic fibrosis: analysis of the ECFS patient registry.
The European respiratory journal, 43(1), 125–133.
VanDevanter, D. R., & Pasta, D. J.
Evidence of diminished FEV1 and FVC in 6-year-olds followed in the European Cystic Fibrosis Patient Registry, 2007-2009.
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 12(6), 786–789.
Boyle, M. P., & De Boeck, K.
A new era in the treatment of cystic fibrosis: correction of the underlying CFTR defect.
The Lancet. Respiratory medicine, 1(2), 158–163.
Boëlle, P. Y., Viviani, L., Busson, P. F., Olesen, H. V., Ravilly, S., Stern, M., Assael, B. M., Barreto, C., Drevinek, P., Thomas, M., Krivec, U., Mei-Zahav, M., Vibert, J. F., Clement, A., Mehta, A., Corvol, H., French CF Modifier Gene Study Investigators, & 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, 7, 64.
Mehta, G., Macek, M., Jr, Mehta, A., & European Registry Working Group.
Cystic fibrosis across Europe: EuroCareCF analysis of demographic data from 35 countries.
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 9 Suppl 2, S5–S21.
McCormick, J., Mehta, G., Olesen, H. V., Viviani, L., Macek, M., Jr, Mehta, A., & European Registry Working Group.
Comparative demographics of the European cystic fibrosis population: a cross-sectional database analysis.
Lancet (London, England), 375(9719), 1007–1013.