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Alexandru, Mihaela; Veil, Raphaël; Rubbo, Bruna; Goutaki, Myrofora; Kim, Sookyung; Lam, Yin Ting; Nevoux, Jérôme; Lucas, Jane S; Papon, Jean-François (2023). Ear and upper airway clinical outcome measures for use in primary ciliary dyskinesia research: a scoping review. European respiratory review, 32(169), p. 220200. European Respiratory Society 10.1183/16000617.0200-2022
Schreck, Leonie Daria; Pedersen, Eva Sophie Lunde; Cizeau, Isabelle; Müller, Loretta; Kruljac, Catherine; Lucas, Jane S; Goutaki, Myrofora; Kuehni, Claudia E (2023). Diagnostic testing in people with primary ciliary dyskinesia: An international participatory study. PLoS Global Public Health, 3(9), e0001522. Public Library of Science 10.1371/journal.pgph.0001522
Pedersen, Eva S L; Schreck, Leonie D; Goutaki, Myrofora; Bellu, Sara; Copeland, Fiona; Lucas, Jane S; Zwahlen, Marcel; Kuehni, Claudia E (2023). Incidence and Severity of SARS-CoV-2 Infections in People With Primary Ciliary Dyskinesia. International journal of public health, 68, p. 1605561. Frontiers 10.3389/ijph.2023.1605561
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
Pedersen, Eva S. L.; Collaud, Eugenie N R; Mozun, Rebeca; Dexter, Katie; Kruljac, Catherine; Silberschmidt, Hansruedi; Lucas, Jane S; Goutaki, Myrofora; Kuehni, Claudia E. (2021). Facemask Usage Among People With Primary Ciliary Dyskinesia During the COVID-19 Pandemic: A Participatory Project. International journal of public health, 66, p. 1604277. Frontiers 10.3389/ijph.2021.1604277
Gaillard, Erol A; Kuehni, Claudia E.; Turner, Steve; Goutaki, Myrofora; Holden, Karl A; de Jong, Carmen C M; Lex, Christiane; Lo, David K H; Lucas, Jane S; Midulla, Fabio; Mozun, Rebeca; Piacentini, Giorgio; Rigau, David; Rottier, Bart; Thomas, Mike; Tonia, Thomy; Usemann, Jakob; Yilmaz, Ozge; Zacharasiewicz, Angela and Moeller, Alexander (2021). European Respiratory Society clinical practice guidelines for the diagnosis of asthma in children aged 5-16 years. European respiratory journal, 58(5), p. 2004173. European Respiratory Society 10.1183/13993003.04173-2020
Gahleitner, Florian; Thompson, James; Jackson, Claire L; Hueppe, Jana F; Behan, Laura; Dehlink, Eleonora; Goutaki, Myrofora; Halbeisen, Florian; Queiroz, Ana Paula L; Thouvenin, Guillaume; Kuehni, Claudia E.; Latzin, Philipp; Lucas, Jane S; Rubbo, Bruna (2021). Lower airway clinical outcome measures for use in primary ciliary dyskinesia research: a scoping review. ERJ Open Research, 7(4), 00320-2021. European Respiratory Society 10.1183/23120541.00320-2021
Pedersen, Eva S.L.; Goutaki, Myrofora; Harris, Amanda L; Dixon, Lucy; Manion, Michele; Rindlisbacher, Bernhard; Lucas, Jane S; Kuehni, Claudia E (2021). SARS-CoV-2 infections in people with PCD: neither frequent, nor particularly severe. European respiratory journal, 58(2), p. 2004548. European Respiratory Society 10.1183/13993003.04548-2020
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
Pedersen, Eva S.L.; Collaud, Eugénie N.R.; Mozun, Rebeca; Ardura-Garcia, Cristina; Lam, Yin Ting; Harris, Amanda; Lucas, Jane S; Copeland, Fiona; Manion, Michele; Rindlisbacher, Bernhard; Silberschmidt, Hansruedi; Goutaki, Myrofora; Kuehni, Claudia E. (2021). COVID-PCD: a participatory research study on the impact of COVID-19 in people with primary ciliary dyskinesia [protocol]. ERJ Open Research, 7(1), 00843-2020. European Respiratory Society 10.1183/23120541.00843-2020
Goutaki, Myrofora; Crowley, Suzanne; Dehlink, Eleonora; Gaupmann, René; Horton, Katie L; Kouis, Panayiotis; Lam, Yin Ting; Loges, Niki T; Lucas, Jane S; Roehmel, Jobst F; Shoemark, Amelia (2021). The BEAT-PCD (Better Experimental Approaches to Treat Primary Ciliary Dyskinesia) Clinical Research Collaboration [editorial]. European respiratory journal, 57(2), p. 2004601. European Respiratory Society 10.1183/13993003.04601-2020
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
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
Halbeisen, Florian S; Shoemark, Amelia; Barbato, Angelo; Boon, Mieke; Carr, Siobhan; Crowley, Suzanne; Hirst, Rob; Karadag, Bulent; Koerner-Rettberg, Cordula; Loebinger, Michael R; Lucas, Jane S; Maitre, Bernard; Mazurek, Henryk; Özçelik, Uğur; Martinů, Vendula; Schwerk, Nicolaus; Thouvenin, Guillaume; Tschanz, Stefan A.; Yiallouros, Panayiotis; Goutaki, Myrofora; ... (2019). Time trends in diagnostic testing for PCD in Europe - Research letter. European respiratory journal, 54(4), p. 1900528. European Respiratory Society 10.1183/13993003.00528-2019
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
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
Kuehni, Claudia E; Lucas, Jane S (2017). Diagnosis of primary ciliary dyskinesia: summary of the ERS Task Force report. Breathe, 13(3), pp. 166-178. European Respiratory Society 10.1183/20734735.008517
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
Goutaki, Myrofora; Meier, Anna Bettina; Halbeisen, Florian; Lucas, Jane S; Dell, Sharon D; Maurer, Elisabeth; Casaulta, Carmen; Jurca, Maja; Spycher, Ben; Kuehni, Claudia E (2016). Clinical manifestations in primary ciliary dyskinesia: systematic review and meta-analysis. European respiratory journal, 48(4), pp. 1081-1095. European Respiratory Society 10.1183/13993003.00736-2016
Lucas, Jane S; Dimitrov, Borislav D; Behan, Laura; Kuehni, Claudia E (2016). Diagnostic testing in primary ciliary dyskinesia. European respiratory journal, 48(3), pp. 960-961. European Respiratory Society 10.1183/13993003.00909-2016
Kuehni, Claudia E; Goutaki, Myrofora; Carroll, Mary; Lucas, Jane S (2016). Primary ciliary dyskinesia: the patients grow up. European respiratory journal, 48(2), pp. 297-300. European Respiratory Society 10.1183/13993003.01098-2016
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
Kühni, Claudia E; Lucas, Jane S (2016). Towards an Earlier Diagnosis of Primary Ciliary Dyskinesia: Which Patients Should Undergo Detailed Diagnostic Testing? Annals of the American Thoracic Society, 13(8), pp. 1239-1243. American Thoracic Society 10.1513/AnnalsATS.201605-331PS
Behan, Laura; Dimitrov, Borislav D; Kuehni, Claudia E; Hogg, Claire; Carroll, Mary; Evans, Hazel J; Goutaki, Myrofora; Harris, Amanda; Packham, Samantha; Walker, Woolf T; Lucas, Jane S (2016). PICADAR: a diagnostic predictive tool for primary ciliary dyskinesia. European respiratory journal, 47(4), pp. 1103-1112. European Respiratory Society 10.1183/13993003.01551-2015
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
Jackson, Claire L; Behan, Laura; Collins, Samuel A; Goggin, Patricia M; Adam, Elizabeth C; Coles, Janice L; Evans, Hazel J; Harris, Amanda; Lackie, Peter; Packham, Samantha; Page, Anton; Thompson, James; Walker, Woolf T; Kuehni, Claudia E; Lucas, Jane S (2016). Accuracy of diagnostic testing in primary ciliary dyskinesia. European respiratory journal, 47(3), pp. 837-848. European Respiratory Society 10.1183/13993003.00749-2015
