Updated 27 April 2021

About the network

Van Koningsbruggen-Rietschel S, Dunlevy F, Bulteel V, Downey D, Dupont L. SARS-CoV-2 disrupts clinical research: the role of a rare disease-specific trial network. European Respiratory Journal 2020; 56: 2002114. https://doi.org/10.1183/13993003.02114-2020

De Boeck K, Bulteel V, Fajac I. Disease-specific clinical trials networks: the example of cystic fibrosis, European Journal of Pediatrics 2016;175:817–824. http://link.springer.com/article/10.1007%2Fs00431-016-2712-z [accessed 30 November 2020].

Fajac I, Bulteel V, Castellani C, Lee T, Derichs N, Drevinek P, Pereira L, Dubois C, Reimann A, De Boeck K. The European Cystic Fibrosis Society–Clinical Trials Network: an international network to optimize clinical research for a rare disease. Clinical Investigation 2013; 3(10):921–926.

Bulteel V, Castellani C, Conway S, Dubois C, Fajac I, Pereira L, Reimann A, De Boeck K. Developing an international network for clinical research: the European Cystic Fibrosis Society – Clinical Trials Network experience. Clinical Investigation 2011; 1(6):775–780.

On behalf of all ECFSCTN network partners:
De Boeck K, Bulteel V, Tiddens H, Wagner T, Fajac I, Conway S, Dufour F, Smyth, Lee T, Sermet I, Kassai-Koupai B, Elborn S. Guideline on the design and conduct of cystic fibrosis clinical trials: The European Cystic Fibrosis Society–Clinical Trial Network (ECFS-CTN). Journal of Cystic Fibrosis 2010; 9(3):S58–S65. 

About endpoints for clinical trials in cystic fibrosis

In name of the European Cystic Fibrosis Society-Clinical Trials Network Patient Advisory Group
R. Coucke, A. Chansard, V. Bontemps et al., “Il faut continuer àposer des questions” patient reported outcome measures in cystic fibrosis: An anthropological perspective”
Journal of Cystic Fibrosis, https://doi.org/10.1016/j.jcf.2021.02.009

Video Article:
Solomon G.M, Bronsveld I, Hayes K, Wilschanski M, Melotti P, Rowe S.M, Sermet-Gaudelus I. Standardized Measurement of Nasal Membrane Transepithelial Potential Difference (NPD). Journal of Visual Experiments 2018;139:e57006. https://www.jove.com/video/57006  [accessed 30 November 2020].

Joint effort by the European Cystic Fibrosis Society-Clinical Trials Network (ECFS-CTN) and the Cystic Fibrosis Foundation-Therapeutics Development Network (CFF-TDN) National Resource Centers Working Group:

Van Straten M, Brody A.S, Ernst C, Guillerman P.R, Harm A.W.M, Tiddens, Nagle, S.K. Guidance for computed tomography (CT) imaging of the lungs for patients with cystic fibrosis (CF) in research studies. Journal of Cystic Fibrosis 2019;19:176-183.  

On behalf of the ECFS-CTN Microbiology Group:
Taccetti G, Denton M, Hayes K, Drevinek P, Sermet-Gaudelus I. A critical review of definitions used to describe Pseudomonas aeruginosa microbiological status in patients with cystic fibrosis for application in clinical trials. Journal of Cystic Fibrosis 2020; 19(1): 52-67. 

On behalf of the European Cystic Fibrosis Society Clinical Trial Network (ECFS-CTN) Standardisation Committee:

Kent L, Reix P, Innes J.A, Zielen S, Le Bourgeois M, Braggion C, et al. Lung clearance index: Evidence for use in clinical trials in cystic fibrosis. 
Journal of Cystic Fibrosis 2014;13(2):123-138.

On behalf of the European Cystic Fibrosis Society Clinical Trial Network (ECFS-CTN) Standardisation Committee:
Fayon M, Kent L, Bui S, Dupont L, Sermet I. Clinimetric properties of broncho-alveolar lavage inflammatory markers in cystic fibrosis.
European Respiratory Journal 2014;43(2):610-26.
On behalf of the European Cystic Fibrosis Society Clinical Trial Network Standardisation Committee:
De Boeck K, Kent L, Davies J, Derichs N, Amaral M, Rowe S.M et al. CFTR biomarkers: time for promotion to surrogate end-point? European Respiratory Journal 2013;41:203–216.


On behalf of the European Cystic Fibrosis Society (ECFS) and the ECFS Clinical Trial Network:
De Boeck K, Tiddens H, Elborn S, Fajac I. A new Clinical Trials Directive to boost academic trials? Lancet Respiratory Medecine 2013;1(2): 99-101.