Cystic fibrosis

ERN-LUNG

ERN-LUNG is a service oriented network for patients and healthcare providers in rare respiratory diseases across Europe and wants to be the one-stop information hub.

Our vision is to transfer knowledge and develop expertise through education and training, rather than making patients or experts travel.

We want to support and train a new generation of highly skilled care teams for rare diseases oft e respiratory system in all Member States .

ERN-LUNG, in cooperation with ERS, has made available useful info and learning material (e.g. webinars, publications) for you.

Enjoy the content!

Educational resources

ILD

Videos

Cystic fibrosis and intestinal organoids A. Vonk, K.M. de Winter-de Groot, J.M. Beekman, K. van der Ent (Utrecht, Netherlands)

Congress sessions

Joint session, Updates in cystic fibrosis (A joint ERS/ECFS symposium), ERS virtual congress 2020

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Update on management of lung infection in cystic fibrosis P. Flume (Charleston, United States of America)
Update on pancreatic and liver disease in cystic fibrosis P. Sogni (Paris, France)
Living with cystic fibrosis: challenges in treatment adherence and social emotional well-being M. Bryon (London, United Kingdom)
Update on new treatments for cystic fibrosis D. Downey (Belfast, Ireland)

Symposium, Cystic fibrosis: from cradle to old age, ERS virtual congress 2020

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Lung inflammation in cystic fibrosis: an overlooked therapeutic target? S. Stick (Perth (WA), Australia)
Transition from adolescent to adult care T. Havermans (LEUVEN, Belgium)
Gastrointestinal issues in cystic fibrosis and their relevance to the lungs B. Plant (Cork, Ireland)
Comorbidities of advanced diseases in patients with cystic fibrosis J. Altenburg (Amsterdam (NH), Netherlands)
Changing demographics of cystic fibrosis and models of care S. Elborn (Belfast (Belfast), United Kingdom)

Webinars

COVID-19 in patients with rare diseases of the respiratory system DG Sante (European commission), T.O. F. Wagner (Frankfurt/Main, Germany), I. Fajac (Paris, France), M. Kreuter (Heidelberg, Germany), G. Verleden (Leuven, Belgium), M. Humbert (Paris, France), Heymut Omran (Münster, Germany) Thursday, 30 April 2020
Novel therapeutics for cystic fibrosis Marcus Mall (Berlin, Germany) Thursday, 9 January 2020

Interactive e-learning content

	Optimised follow-up for paediatric and adult cystic fibrosis patients R. Kessler (Starsbourg, France), M. Schöni (Bern, Switzerland) Open

CME tests

Report of the European Respiratory Society/European Cystic Fibrosis Society task force on the care of adults with cystic fibrosis Elborn J. Stuart, Bell Scott C., Madge Susan L., Burgel Pierre-Regis, Castellani Carlo, Conway Steven, De Rijcke Karleen, Dembski Birgit, Drevinek Pavel, Heijerman Harry G.M., Innes J. Alistair, Lindblad Anders, Marshall Bruce, Olesen Hanne V., Reimann Andreas L., Solé Ampara, Viviani Laura, Wagner Thomas O.F., Welte Tobias, Blasi Francesco Eur Respir J 2016; 47: 420-428

Webcasts

The cystic fibrosis transmembrane conductance regulator and its modulators: clinical implications F. Ratjen (Toronto (ON), Canada)
Mucoviscidose: enfin des traitements ciblés / Cystic fibrosis: targeted therapies, at last ! P. Burgel (Sorbonne Paris Cité, France)
The need for lung transplantation in cystic fibrosis (CF) in the era of new treatment C. Benden (Zurich, Switzerland)
Persistent non-tuberculous mycobacteria in cystic fibrosis M. Ramphul (Leicester (Leicestershire), United Kingdom)
Comorbidities of advanced diseases in patients with cystic fibrosis J. Altenburg (Amsterdam (NH), Netherlands)
Gastrointestinal issues in cystic fibrosis and their relevance to the lungs B. Plant (Cork, Ireland)
Transition from adolescent to adult care T. Havermans (LEUVEN, Belgium)
Lung inflammation in cystic fibrosis: an overlooked therapeutic target? S. Stick (Perth (WA), Australia)
Ultrasound diaphragm activity in patients with cystic fibrosis: relationship to disease severity and peripheral muscle strength A. Maynard (Montreal, Canada), F. Tremblay (Montreal, Canada), B. Dubé (Montreal, Canada)
A pilot study of a novel ELISA test using synthetic mycolic acid antigens for serodiagnosis of nontuberculous mycobacterial infections. J. Bashford (Cambridge, United Kingdom), R. Floto (Cambridge, United Kingdom), C. Haworth (Cambridge, United Kingdom), J. Ryan (Cambridge, United Kingdom), J. Al Dulayymi (Wales, United Kingdom), A. Cervi (Wales, United Kingdom), M. Baird (Wales, United Kingdom)
A First Look at the Italian Registry on Pulmonary Non-Tuberculous Mycobacteria (NTM) -IRENE S. Aliberti (Milano, Italy), M. Spotti (Milano, Italy), G. Sotgiu (Sassari, Italy), M. Ferrarese (Milano, Italy), P. Castellotti (Milano, Italy), A. Gramegna (Milano, Italy), M. Tadolini (Bologna, Italy), J. Mencarini (Firenze, Italy), G. Gualano (Roma, Italy), S. Cerri (Modena, Italy), G. Montemurro (Roma, Italy), G. Gardini (Brescia, Italy), A. Calcagno (Torino, Italy), F. Dente (Pisa, Italy), M. Trezzi (Pistoia, Italy), P. Faverio (Monza, Italy), M. Malerba (Vercelli, Italy), G. Cucchetto (Verona, Italy), E. Tortoli (Milano, Italy), M. Mirsaeidi (Miami, United States of America), A. Previdi (Milano, Italy), A. Gori (Milano, Italy), L. Codecasa (Milano, Italy), F. Blasi (Milano, Italy), .. On Behalf Of The Irene Network (Milano, Italy)
Pseudomonas aeruginosa influences the inflammatory response of primary bronchial epithelial cells to rhinovirus infection A. Endres (Frankfurt am Main, Germany), R. Schubert (Frankfurt am Main, Germany), P. Braubach (Hanover, Germany), D. Jonigk (Hanover, Germany), M. Hogardt (Frankfurt am Main, Germany), H. Boland (Frankfurt am Main, Germany), G. Rohde (Frankfurt am Main, Germany), C. Bellinghausen (Frankfurt am Main, Germany)
Using integrated omics to assess the effects of rhinovirus infection in children with Cystic Fibrosis (CF). P. Agudelo-Romero (Perth (WA), Australia), K. Martinovich (Perth (WA), Australia), J. Chandler (Atlanta (GA), United States of America), K. Ling (Perth (WA), Australia), E. Sutanto (Perth (WA), Australia), D. Jones (Atlanta (GA), United States of America), R. Tirouvanzium (Atlanta (GA), United States of America), S. Stick (Perth (WA), Australia), L. Garratt (Perth (WA), Australia), A. Kicic (Perth (WA), Australia), W. Erp (Perth (WA), Australia), A. Cf (Perth (WA), Australia)
Multiple-breath washout and pulmonary function tests versus high-resolution computed tomography scores in adults with cystic fibrosis. A. Cherniak (Moscow, Russian Federation), Z. Naumenko (Moscow, Russian Federation), S. Krasovskiy (Moscow, Russian Federation), K. Mikhailichenko (Moscow, Russian Federation), G. Nekludova (Moscow, Russian Federation)
Interpretation of multiple breath washout (MBW) measurements of lung function using mathematical modelling and hyperpolarised 3He gas MRI C. Whitfield (Manchester, United Kingdom), L. Smith (Sheffield, United Kingdom), O. Jensen (Manchester, United Kingdom), N. West (Sheffield, United Kingdom), M. Wildman (Sheffield, United Kingdom), G. Collier (Sheffield, United Kingdom), J. Wild (Sheffield, United Kingdom), A. Horsley (Manchester, United Kingdom)
Correlation of Hyperpolarised Xenon-129 Magnetic Resonance Imaging (129Xe-MRI) of the Lung with Multi-Breath Washout (MBW) in Children with Severe Asthma S. Safavi (Nottingham, United Kingdom), B. Zanette (Toronto, Canada), S. Munidasa (Toronto, Canada), E. Stirrat (Toronto, Canada), D. Li (Toronto, Canada), T. Moraes (Toronto, Canada), P. Subbarao (Toronto, Canada), G. Santyr (Toronto, Canada)
Ivacaftor/lumacaftor changes the lung microbiome and metabolome in cystic fibrosis patients A. Neerincx (Amsterdam, Netherlands), K. Whiteson (Irvine, California, United States of America), J. Phan (Irvine, California, United States of America), P. Brinkman (Amsterdam, Netherlands), M. Abdel-Aziz (Amsterdam, Netherlands), E. Weersink (Amsterdam, Netherlands), J. Altenburg (Amsterdam, Netherlands), C. Majoor (Amsterdam, Netherlands), A. Maitland-Van Der Zee (Amsterdam, Netherlands), L. Bos (Amsterdam, Netherlands)
Feasibility of unsedated lung MRI in preschoolers with Cystic fibrosis – a comparison to lung function. C. Willers (Bern, Switzerland), B. Frauchiger (Bern, Switzerland), Y. Salem (Bern, Switzerland), P. Latzin (Bern, Switzerland), K. Ramsey (Bern, Switzerland)
Multivolume magnetic resonance imaging (1H-MRI) for the longitudinal assessment of cystic fibrosis (CF) lung disease: comparison with spirometry F. Pennati (Milano (MI), Italy), I. Borzani (Milano (MI), Italy), L. Moroni (Milano (MI), Italy), M. Russo (Milano (MI), Italy), A. Aliverti (Milano (MI), Italy), C. Colombo (Milano (MI), Italy)
Longitudinal assessment of Lung Clearance Index as a marker of disease progression in a cohort of children with cystic fibrosis and normal spirometry J. Spano (Palo Alto, United States of America), S. Ryan (Palo Alto, United States of America), C. Milla (Palo Alto, United States of America)
The Lung Clearance Index detects incomplete lung function recovery with acute respiratory events in school-age children with cystic fibrosis L. Perrem (Toronto (ON), Canada), S. Stanojevic (Toronto (ON), Canada), M. Shaw (Toronto (ON), Canada), R. Jensen (Toronto (ON), Canada), J. Guido (Toronto (ON), Canada), M. Solomon (Toronto (ON), Canada), H. Grasemann (Toronto (ON), Canada), N. Sweezey (Toronto (ON), Canada), S. Davies (North Carolina, United States of America), D. Sanders (Indianapolis, United States of America), N. Mcdonald (Toronto (ON), Canada), S. Isaac (Toronto (ON), United States of America), S. Jara (Indianapolis, United States of America), C. Clem (Indianapolis, United States of America), F. Ratjen (Toronto (ON), Canada)
Early determinants of lung disease in children with cystic fibrosis S. Stanojevic (Toronto (ON), Canada), S. Davis (Chapel Hill, United States of America), D. Sanders (Indianapolis, United States of America), L. Perem (Toronto (ON), Canada), M. Shaw (Toronto (ON), Canada), J. Guido (Toronto (ON), Canada), R. Jensen (Toronto (ON), Canada), S. Jara (Indianapolis, United States of America), C. Clem (Toronto (ON), Canada), M. Solomon (Toronto (ON), Canada), N. Sweezey (Toronto (ON), Canada), H. Grasemann (Toronto (ON), Canada), V. Waters (Toronto (ON), Canada), F. Ratjen (Toronto (ON), Canada)
Longitudinal course of clinically measured lung clearance index in children with cystic fibrosis B. Frauchiger (Bern, Switzerland), S. Binggeli (Bern, Switzerland), S. Yammine (Bern, Switzerland), B. Spycher (Bern, Switzerland), K. Ramsey (Bern, Switzerland), P. Latzin (Bern, Switzerland)
Lung clearance index and functional MRI outcomes to assess lung disease in preschool children with cystic fibrosis B. Frauchiger (Bern, Switzerland), C. Willers (Bern, Switzerland), Y. Salem (Bern, Switzerland), P. Latzin (Bern, Switzerland), K. Ramsey (Bern, Switzerland)
Late Breaking Abstract - Use of ultra-low dose CT does not impact structure-function relationships in early Cystic Fibrosis lung disease K. Bayfield (Sydney, Australia), O. Weinheimer (Heidelberg, Germany), C. Boyton (Sydney, Australia), R. Fitzpatrick (Sydney, Australia), A. Middleton (Sydney, Australia), B. Kennedy (Sydney, Australia), A. Blaxland (Sydney, Australia), G. Jayasuriya (Sydney, Australia), N. Caplain (Sydney, Australia), M. Wielpuetz (Heidelberg, Germany), L. Yu (Minneosota, United States of America), C. Galban (Michigan, United States of America), T. Robinson (Stanford, United States of America), B. Bartholmai (Minneosota, United States of America), P. Gustafsson (Skövde, Sweden), D. Fitzgerald (Sydney, Australia), H. Selvadurai (Sydney, Australia), P. Robinson (Sydney, Australia)
Late Breaking Abstract - Effects of long-term Tobramycin Inhalation Solution (TIS) once daily on exacerbation rate in patients with non-cystic fibrosis bronchiectasis. The BATTLE Randomized Controlled Trial L. Terpstra (Alkmaar (NH), Netherlands), I. Bronsveld (Utrecht, Netherlands), J. Doodeman (Alkmaar (NH), Netherlands), W. Rozenmeijer (Alkmaar (NH), Netherlands), H. Heijerman (Utrecht, Netherlands), W. Boersma (Alkmaar (NH), Netherlands)
Genomically-guided therapies: a new era for cystic fibrosis M. Mall (Berlin, Germany)
Volumetric capnography: a promising lung function test in cystic fibrosis? A. Kentgens (Bern, Switzerland), O. Lagiou (Patras, Greece), B. Frauchiger (Bern, Switzerland), F. Wyler (Bern, Switzerland), I. Theodorakopoulos (Patras, Greece), S. Yammine (Bern, Switzerland), S. Fouzas (Patras, Greece), P. Latzin (Bern, Switzerland)
Update on new treatments for cystic fibrosis D. Downey (Belfast, Ireland)
Living with cystic fibrosis: challenges in treatment adherence and social emotional well-being M. Bryon (London, United Kingdom)
Update on pancreatic and liver disease in cystic fibrosis P. Sogni (Paris, France)
Update on management of lung infection in cystic fibrosis P. Flume (Charleston, United States of America)
Biofilms and how to combat them: examples from cystic fibrosis T. Bjarnsholt (Copenhagen, Denmark)
Risk factors for progression of cystic fibrosis lung disease from childhood to adulthood S. Stick (Perth (WA), Australia)
Novel therapeutics for cystic fibrosis Marcus Mall (Berlin, Germany) Thursday, 9 January 2020

Bacterial dysbiosis in pediatric lung diseases such as asthma and CF A. Dalpke (Dresden, Germany)
The need for lung transplantation in cystic fibrosis (CF) in the era of new treatment C. Benden (Zurich, Switzerland)
Using integrated omics to assess the effects of rhinovirus infection in children with Cystic Fibrosis (CF). P. Agudelo-Romero (Perth (WA), Australia), K. Martinovich (Perth (WA), Australia), J. Chandler (Atlanta (GA), United States of America), K. Ling (Perth (WA), Australia), E. Sutanto (Perth (WA), Australia), D. Jones (Atlanta (GA), United States of America), R. Tirouvanzium (Atlanta (GA), United States of America), S. Stick (Perth (WA), Australia), L. Garratt (Perth (WA), Australia), A. Kicic (Perth (WA), Australia), W. Erp (Perth (WA), Australia), A. Cf (Perth (WA), Australia)
Multivolume magnetic resonance imaging (1H-MRI) for the longitudinal assessment of cystic fibrosis (CF) lung disease: comparison with spirometry F. Pennati (Milano (MI), Italy), I. Borzani (Milano (MI), Italy), L. Moroni (Milano (MI), Italy), M. Russo (Milano (MI), Italy), A. Aliverti (Milano (MI), Italy), C. Colombo (Milano (MI), Italy)