Bibliografisk note

Funding Information:
The authors thank the individuals with PCD and their families for their continuous support and the willingness to participate in clinical and research trials. We especially acknowledge the patient support groups in Europe as well as the US PCDF. For excellent organisational assistance with the ERN-LUNG International PCD Registry, the authors thank the study nurses S. Helms and M. Tekaat. For maintenance of the International PCD Registry, we thank J. Varghese and S. Riepenhausen (University Muenster, Institute of Medical Informatics, Muenster, Germany), who also supported the creation of the figures. All participating centres are HCPs in ERN-LUNG. The authors thank the ERN-LUNG coordinating centre in Frankfurt (coordinator T.O.F. Wagner and team). In particular, we acknowledge ECFS-CTN for its valuable guidance and support in building the PCD-CTN.

Funding Information:
Conflict of interest: J. Raidt declares grants for Clinical Research Unit “Male Germ Cells: from Genes to Function” (CRU 326) – Subproject RA3522/1-1 from the Deutsche Forschungsgemeinschaft, in connection with the present manuscript; that they are a holder of patent WO 2020/165352 A1 (Treatment of ciliopathies); and an unpaid role as a Deputy Director of PCD-CTN. B. Maitre declares unpaid roles as a Deputy Director of PCD-CTN and as a member of the scientific committee of RADICO PCD. P. Pennekamp declares research grants to their institution from NEOCYST (BMBF, 01GM1903A); and that they are a holder of patent WO 2020/165352 A1 (Treatment of ciliopathies). M. Armengot declares research grant FIS PI19/00949 from Instituto de Salud Carlos III, in connection with the present manuscript. M. Boon declares Forton grant 2020-J1810150-217926 from the King Baudouin Foundation, in the 36 months prior to manuscript submission. S.B. Carr declares grants to their institution from the National Institute of Health Research (Programme Development Grant 202952; Health Technology Assessment Grant NIHR121889; HTA grant 14/22/23; NIHR RfPb QOL-PCD; NIHR RfPb VALU-CF); consulting fees paid to their institution by Vertex Pharmaceuticals; personal and institutional honoraria from Chiesi Pharmaceuticals; payment to their institution for participation on a Data Safety Monitoring Board or Advisory Board from Profile Pharma, Pharmaxis and Vertex Pharmaceuticals, all in the 36 months prior to manuscript submission; and that they are Chair of the UK CF Registry Steering Committee (payment to their institution) and of the European CF Society Patient Registry Scientific Committee (unpaid). M.A. Mall declares research grant 82DZL009B1 from the German Federal Ministry of Education and Research, in connection with the present manuscript. M. Narayanan declares that they have been a co-applicant on the National Institute for Health Research – Research for patient benefit (NIHR –RfPB) grant for ‘Parent reported quality of life measures for young children with primary ciliary dyskinesia (QOL-PCD study)’ in the 36 months prior to manuscript submission; and that they are a member of the British Paediatric Respiratory Society executive committee and the British Thoracic Society standards of care committee. P. Pohunek declares research grants from the Ministry of Health of the Czech Republic (NV19-07-00210) and Charles University Grant Agency (670119P) in connection with the present manuscript. S. Range declares an unpaid role as medical advisor to PCD Support. F.C. Ringshausen declares grants to their institution from the German Center for Lung Research (DZL), the German Center for Infection Research (DZIF), IMI (EU/EFPIA), iABC Consortium (including Alaxia, Basilea, Novartis and Polyphor), Mukoviszidose Institute, Novartis, Insmed Germany, Grifols, Bayer and InfectoPharm; consulting fees from Parion, Grifols, Zambon, Insmed and the Helmholtz-Zentrum für Infektionsforschung; payments or honoraria from I!DE Werbeagentur GmbH; Interkongress GmbH; AstraZeneca; Insmed; Grifols and Universitätsklinikum Frankfurt am Main; payment to their institution for expert testimony at the Social Court Cologne; support for attending meetings from German Kartagener Syndrome and PCD PAG and Mukoviszidose e.V; participation on a Data Safety Monitoring Board or Advisory Board for Insmed, Grifols and Shionogi; fees for clinical trial participation paid to their institution by Abbvie, AstraZeneca, Boehringer Ingelheim, Celtaxsys, Corbus, Insmed, Novartis, Parion, University of Dundee, Vertex and Zambon; and honorary roles as Coordinator of the ERN-LUNG Bronchiectasis Core Network, Chair of the German Bronchiectasis Registry PROGNOSIS, Member of the SteerCo of the European Bronchiectasis Registry EMBARC, Member of the SteerCo of the European NTM Registry EMBARC-NTM, Co-Speaker of the Medical Advisory Board of the German Kartagener Syndrome and PCD PAG, Speaker of the Respiratory Infections and TB group of the German Respiratory Society (DGP), Speaker of the Cystic Fibrosis group of German Respiratory Society (DGP), PI of the DZL, member of the protocol review committee of the PCD-CTN and Member of Physician Association of the German Cystic Fibrosis PAG. J. Roehmel declares payments or honoraria from Vertex Pharmaceuticals, in the 36 months prior to manuscript submission. G. Thouvenin declares unpaid membership of the RADICO PCD scientific committee. H. Omran declares grants for Clinical Research Unit “Male Germ Cells: from Genes to Function” (CRU 326) – Subproject RA3522/1-1 from the Deutsche Forschungsgemeinschaft, from Interdisziplinaeres Zentrum für Klinische Forschung Muenster (Om2/009/12; Om2/015/16; Om2/010/20), from BESTCILIA (EU FP7 GA 305404) and from Registry Warehouse (Horizon2020 GA 777295), all in connection with the present manuscript; in addition to grants to their institution from LYSOCIL (Horizon2020 GA n°811087) NEOCYST (BMBF, 01GM1903A) and Transkripttherapie für primäre ziliäre Dyskinesien (Zentrales Innovationsprojekt Mittelstand (ZIM), BMWi; ZF-4610102SK8), in the 36 months prior to manuscript submission; that they are a holder of patent WO 2020/165352 A1 (Treatment of ciliopathies); and unpaid roles as Head of the ERN-LUNG PCD Core and as a member of the PCD Family Support Group medical advisory board. K.G. Nielsen declares funding for the present manuscript from the Danish Children’s Lung Foundation (Børnelungefonden); and an unpaid role as a Director of the PCD-CTN. All other authors declare no competing interests.

Funding Information:
Support statement: This work was supported in part by grants from the Danish “Children’s Lung Foundation” (Børnelungefonden, K.G. Nielsen), the German Federal Ministry of Education and Research (82DZL009B1, M.A. Mall), the “Deutsche Forschungsgemeinschaft” (DFG OM6/7, OM6/8, OM6/10, OM6/14, CRU 326 (subprojects OM6/11 (H. Omran), RA3522/1-1 ( J. Raidt)), the “Interdisziplinaeres Zentrum für Klinische Forschung Muenster” (Om2/009/12, Om2/015/16 and Om2/010/20), Registry Warehouse (Horizon2020 GA 777295)) and BESTCILIA (EU FP7 GA 305404). It was also supported by the Ministry of Health of the Czech Republic (NV19-07-00210, P. Pohunek) and Charles University Grant Agency (670119P, P. Pohunek) as well as the Spanish Instituto de Salud Carlos III (FIS PI19/00949, M. Armengot). B. Maitre, A. Coste, G. Thouvenin are members of the RadiCONetwork (Inserm, France). Funding information for this article has been deposited with the Crossref Funder Registry.

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© The authors 2022.