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Kos, Renate; Goutaki, Myrofora; Kobbernagel, Helene E; Rubbo, Bruna; Shoemark, Amelia; Aliberti, Stefano; Altenburg, Josje; Anagnostopoulou, Pinelopi; Athanazio, Rodrigo A; Beydon, Nicole; Dell, Sharon D; Emiralioglu, Nagehan; Ferkol, Thomas W; Loebinger, Michael R; Lorent, Natalie; Maître, Bernard; Marthin, June; Morgan, Lucy C; Nielsen, Kim G; Ringshausen, Felix C; ... (2024). A BEAT-PCD consensus statement: a core outcome set for pulmonary disease interventions in primary ciliary dyskinesia. ERJ Open Research, 10(1), 00115-2023. European Respiratory Society 10.1183/23120541.00115-2023
Beydon, Nicole; Kouis, Panayotis; Marthin, June K; Latzin, Philipp; Colas, Murielle; Davis, Stephanie D; Haarman, Eric; Harris, Amanda Lea; Hogg, Claire; Kilbride, Emma; Kuehni, Claudia E; Marangu, Diana; Nielsen, Kim G; Pendergrast, Catherine; Robinson, Phil; Rumman, Nisreen; Rutter, Matthew; Walker, Woolf T; Ferkol, Thomas and Lucas, Jane S (2023). Nasal nitric oxide measurement in children for the diagnosis of primary ciliary dyskinesia: European Respiratory Society technical standard. European respiratory journal, 61(4), p. 2202031. European Respiratory Society 10.1183/13993003.02031-2022
Halbeisen, Florian S; Pedersen, Eva S L; Goutaki, Myrofora; Spycher, Ben D; Amirav, Israel; Boon, Mieke; Malena, Cohen-Cymberknoh; Crowley, Suzanne; Emiralioglu, Nagehan; Haarman, Eric G; Karadag, Bulent; Koerner-Rettberg, Cordula; Latzin, Philipp; Loebinger, Michael R; Lucas, Jane S; Mazurek, Henryk; Morgan, Lucy; Marthin, June; Pohunek, Petr; Santamaria, Francesca; ... (2022). Lung function from school age to adulthood in primary ciliary dyskinesia. European respiratory journal, 60(4), p. 2101918. European Respiratory Society 10.1183/13993003.01918-2021
Beydon, Nicole; Ferkol, Thomas; Harris, Amanda Lea; Colas, Murielle; Davis, Stephanie D; Haarman, Eric; Hogg, Claire; Kilbride, Emma; Kouis, Panayotis; Kuehni, Claudia E; Latzin, Philipp; Marangu, Diana; Marthin, June; Nielsen, Kim G; Robinson, Phil; Rumman, Nisreen; Rutter, Matthew; Walker, Woolf; Lucas, Jane S (2022). An international survey on nasal nitric oxide measurement practices for the diagnosis of primary ciliary dyskinesia. ERJ Open Research, 8(2), 00708-2021. European Respiratory Society 10.1183/23120541.00708-2021
Marthin, June K; Lucas, Jane S; Boon, Mieke; Casaulta, Carmen; Crowley, Suzanne; Destouches, Damien M S; Eber, Ernst; Escribano, Amparo; Haarman, Eric; Hogg, Claire; Maitre, Bernard; Marsh, Gemma; Martinu, Vendula; Moreno-Galdó, Antonio; Mussaffi, Huda; Omran, Heymut; Pohunek, Petr; Rindlisbacher, Bernhard; Robinson, Phil; Snijders, Deborah; ... (2021). International BEAT-PCD consensus statement for infection prevention and control for primary ciliary dyskinesia in collaboration with ERN-LUNG PCD Core Network and patient representatives. ERJ Open Research, 7(3) European Respiratory Society 10.1183/23120541.00301-2021
Wallmeier, Julia; Nielsen, Kim G; Kuehni, Claudia E.; Lucas, Jane S; Leigh, Margaret W; Zariwala, Maimoona A; Omran, Heymut (2020). Motile ciliopathies. Nature reviews. Disease Primers, 6(1), p. 77. Nature Publishing Group 10.1038/s41572-020-0209-6
Crowley, Suzanne; Azevedo, Inês; Boon, Mieke; Bush, Andrew; Eber, Ernst; Haarman, Eric; Karadag, Bulent; Kötz, Karsten; Leigh, Margaret; Moreno-Galdó, Antonio; Mussaffi, Huda; Nielsen, Kim G; Omran, Heymut; Papon, Jean-François; Pohunek, Petr; Priftis, Kostas; Rindlisbacher, Bernhard; Santamaria, Francesca; Valiulis, Arunas; Witt, Michal; ... (2020). Access to medicines for rare diseases: beating the drum for primary ciliary dyskinesia [editorial]. ERJ Open Research, 6(3), 00377-2020. European Respiratory Society 10.1183/23120541.00377-2020
Ardura-Garcia, Cristina; Goutaki, Myrofora; Carr, Siobhán B; Crowley, Suzanne; Halbeisen, Florian S.; Nielsen, Kim G; Pennekamp, Petra; Raidt, Johanna; Thouvenin, Guillaume; Yiallouros, Panayiotis K; Omran, Heymut; Kuehni, Claudia E. (2020). Registries and collaborative studies for primary ciliary dyskinesia in Europe. ERJ Open Research, 6(2), 00005-2020. European Respiratory Society 10.1183/23120541.00005-2020
Kobbernagel, Helene E; Buchvald, Frederik F; Haarman, Eric G; Casaulta, Carmen; Collins, Samuel A; Hogg, Claire; Kuehni, Claudia E.; Lucas, Jane S; Moser, Claus E; Quittner, Alexandra L; Raidt, Johanna; Rosthøj, Susanne; Sørensen, Anne L; Thomsen, Kim; Werner, Claudius; Omran, Heymut; Nielsen, Kim G (2020). Efficacy and safety of azithromycin maintenance therapy in primary ciliary dyskinesia (BESTCILIA): a multicentre, double-blind, randomised, placebo-controlled phase 3 trial. The lancet. Respiratory medicine, 8(5), pp. 493-505. Elsevier 10.1016/S2213-2600(20)30058-8
Goutaki, Myrofora; Papon, Jean-François; Boon, Mieke; Casaulta, Carmen; Eber, Ernst; Escudier, Estelle; Halbeisen, Florian S.; Harris, Amanda; Hogg, Claire; Honore, Isabelle; Jung, Andreas; Karadag, Bulent; Koerner-Rettberg, Cordula; Legendre, Marie; Maitre, Bernard; Nielsen, Kim G; Rubbo, Bruna; Rumman, Nisreen; Schofield, Lynne; Shoemark, Amelia; ... (2020). Standardised clinical data from patients with primary ciliary dyskinesia: FOLLOW-PCD. ERJ Open Research, 6(1), 00237-2019. European Respiratory Society 10.1183/23120541.00237-2019
Lucas, Jane S; Gahleitner, Florian; Amorim, Adelina; Boon, Mieke; Brown, Philippa; Constant, Carolina; Cook, Simon; Crowley, Suzanne; Destouches, Damien M S; Eber, Ernst; Mussaffi, Huda; Haarman, Eric; Harris, Amanda; Koerner-Rettberg, Cordula; Kuehni, Claudia E.; Latzin, Philipp; Loebinger, Michael R; Lorent, Natalie; Maitre, Bernard; Moreno-Galdó, Antonio; ... (2019). Pulmonary exacerbations in patients with primary ciliary dyskinesia: an expert consensus definition for use in clinical trials. ERJ Open Research, 5(1), 00147-2018. European Respiratory Society 10.1183/23120541.00147-2018
Farley, Hannah; Rubbo, Bruna; Bukowy-Bieryllo, Zuzanna; Fassad, Mahmoud; Goutaki, Myrofora; Harman, Katharine; Hogg, Claire; Kuehni, Claudia E; Lopes, Susana; Nielsen, Kim G; Norris, Dominic P; Reula, Ana; Rumman, Nisreen; Shoemark, Amelia; Wilkins, Hannah; Wisse, Agatha; Lucas, Jane S; Marthin, June K (2018). Proceedings of the 3rd BEAT-PCD Conference and 4th PCD Training School. BMC Proceedings, 12(Suppl 16), p. 64. BioMed Central 10.1186/s12919-018-0161-6
Halbeisen, Florian S; Goutaki, Myrofora; Spycher, Ben D; Amirav, Israel; Behan, Laura; Boon, Mieke; Hogg, Claire; Casaulta, Carmen; Crowley, Suzanne; Haarman, Eric G; Karadag, Bulent; Koerner-Rettberg, Cordula; Loebinger, Michael R; Mazurek, Henryk; Morgan, Lucy; Nielsen, Kim G; Omran, Heymut; Santamaria, Francesca; Schwerk, Nicolaus; Thouvenin, Guillaume; ... (2018). Lung function in patients with Primary Ciliary Dyskinesia: an iPCD Cohort study. European respiratory journal, 52(2), p. 1801040. European Respiratory Society 10.1183/13993003.01040-2018
Robinson, Paul D; Latzin, Philipp; Ramsey, Kathryn Angela; Stanojevic, Sanja; Aurora, Paul; Davis, Stephanie D; Gappa, Monika; Hall, Graham L; Horsley, Alex; Jensen, Renee; Lum, Sooky; Milla, Carlos; Nielsen, Kim G; Pittman, Jessica E; Rosenfeld, Margaret; Singer, Florian; Subbarao, Padmaja; Gustafsson, Per M; Ratjen, Felix (2018). Preschool Multiple-Breath Washout Testing. An Official American Thoracic Society Technical Statement. American journal of respiratory and critical care medicine, 197(5), e1-e19. American Lung Association 10.1164/rccm.201801-0074ST
Goutaki, Myrofora; Halbeisen, Florian S; Spycher, Ben D; Maurer, Elisabeth; Belle, Fabiën; Amirav, Israel; Behan, Laura; Boon, Mieke; Carr, Siobhan; Casaulta, Carmen; Clement, Annick; Crowley, Suzanne; Dell, Sharon; Ferkol, Thomas; Haarman, Eric G; Karadag, Bulent; Knowles, Michael; Koerner-Rettberg, Cordula; Leigh, Margaret W; Loebinger, Michael R; ... (2017). Growth and nutritional status, and their association with lung function: a study from the international Primary Ciliary Dyskinesia Cohort. European respiratory journal, 50(6), p. 1701659. European Respiratory Society 10.1183/13993003.01659-2017
Goutaki, Myrofora; Maurer, Elisabeth; Halbeisen, Florian S; Amirav, Israel; Barbato, Angelo; Behan, Laura; Boon, Mieke; Casaulta, Carmen; Clement, Annick; Crowley, Suzanne; Haarman, Eric; Hogg, Claire; Karadag, Bulent; Koerner-Rettberg, Cordula; Leigh, Margaret W; Loebinger, Michael R; Mazurek, Henryk; Morgan, Lucy; Nielsen, Kim G; Omran, Heymut; ... (2017). The international primary ciliary dyskinesia cohort (iPCD Cohort): methods and first results. European respiratory journal, 49(1), p. 1601181. European Respiratory Society 10.1183/13993003.01181-2016
Lucas, Jane S; Barbato, Angelo; Collins, Samuel A; Goutaki, Myrofora; Behan, Laura; Caudri, Daan; Dell, Sharon; Eber, Ernst; Escudier, Estelle; Hirst, Robert A; Hogg, Claire; Jorissen, Mark; Latzin, Philipp; Legendre, Marie; Leigh, Margaret W; Midulla, Fabio; Nielsen, Kim G; Omran, Heymut; Papon, Jean-Francois; Pohunek, Petr; ... (2017). European Respiratory Society guidelines for the diagnosis of primary ciliary dyskinesia. European respiratory journal, 49(1), p. 27836958. European Respiratory Society 10.1183/13993003.01090-2016
Kobbernagel, Helene E; Buchvald, Frederik F; Haarman, Eric G; Casaulta Aebischer, Carmen; Collins, Samuel A; Hogg, Claire; Kühni, Claudia; Lucas, Jane S; Omran, Heymut; Quittner, Alexandra L; Werner, Claudius; Nielsen, Kim G (2016). Study protocol, rationale and recruitment in a European multi-centre randomized controlled trial to determine the efficacy and safety of azithromycin maintenance therapy for 6 months in primary ciliary dyskinesia. BMC pulmonary medicine, 16(1), p. 104. BioMed Central 10.1186/s12890-016-0261-x
Werner, Claudius; Lablans, Martin; Ataian, Maximilian; Raidt, Johanna; Wallmeier, Julia; Große-Onnebrink, Jörg; Kuehni, Claudia E; Haarman, Eric G; Leigh, Margaret W; Quittner, Alexandra L; Lucas, Jane S; Hogg, Claire; Witt, Michal; Priftis, Kostas N; Yiallouros, Panayiotis; Nielsen, Kim G; Santamaria, Francesca; Ückert, Frank; Omran, Heymut (2016). An international registry for primary ciliary dyskinesia. European respiratory journal, 47(3), pp. 849-859. European Respiratory Society 10.1183/13993003.00776-2015
