Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Case Reports
. 2018 Dec 18;12(Suppl 16):64.
doi: 10.1186/s12919-018-0161-6. eCollection 2018.

Proceedings of the 3rd BEAT-PCD Conference and 4th PCD Training School

Hannah Farley  1   2 , Bruna Rubbo  3 , Zuzanna Bukowy-Bieryllo  4 , Mahmoud Fassad  5   6 , Myrofora Goutaki  7   8 , Katharine Harman  9 , Claire Hogg  10   11 , Claudia E Kuehni  7   8 , Susana Lopes  12 , Kim G Nielsen  13 , Dominic P Norris  1 , Ana Reula  14   15 , Nisreen Rumman  16 , Amelia Shoemark  9   17 , Hannah Wilkins  18 , Agatha Wisse  7 , Jane S Lucas  3 , June K Marthin  13
Affiliations
Case Reports

Proceedings of the 3rd BEAT-PCD Conference and 4th PCD Training School

Hannah Farley et al. BMC Proc. .

Abstract

Primary ciliary dyskinesia (PCD) is a chronic suppurative airways disease that is usually recessively inherited and has marked clinical phenotypic heterogeneity. Classic symptoms include neonatal respiratory distress, chronic rhinitis since early childhood, chronic otitis media, recurrent airway infections leading to bronchiectasis, chronic sinusitis, laterality defects with and without congenital heart disease including abnormal situs in approximately 50% of the cases, and male infertility. Lung function deteriorates progressively from childhood throughout life. 'Better Experimental Approaches to Treat Primary Ciliary Dyskinesia' (BEAT-PCD) is a network of scientists and clinicians coordinating research from basic science through to clinical care with the intention of developing treatments and diagnostics that lead to improved long-term outcomes for patients. BEAT-PCD activities are supported by EU funded COST Action (BM1407). The third BEAT-PCD conference and fourth PCD training school were held jointly in February 2018 in Lisbon, Portugal. Presentations and workshops focussed on advancing the knowledge and skills relating to PCD in: basic science, epidemiology, diagnostic testing, clinical management and clinical trials. The multidisciplinary conference provided an interactive platform for exchanging ideas through a program of lectures, poster presentations, breakout sessions and workshops. Three working groups met to plan consensus statements. Progress with BEAT-PCD projects was shared and new collaborations were fostered. In this report, we summarize the meeting, highlighting developments made during the meeting.

Keywords: Chronic respiratory disease; Multidisciplinary; Primary ciliary dyskinesia.

PubMed Disclaimer

Conflict of interest statement

Not applicableNot applicableJSL has declared that she has received expenses to attend advisory board meetings from Aerocrine, Vertex and Parion. JSL has received research grant funding and honoraria from Circassia. All other authors declare that they have no competing interests.Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
A diagrammatic representation of the aims of work groups within BEAT-PCD and COST action-associated activities. WG = work group
Fig. 2
Fig. 2
Country of work of respondents of the feedback survey for the 3rd BEAT-PCD Conference & 4th Training School. ESR: Early stage researcher, ASR: advanced stage researcher
Fig. 3
Fig. 3
Main expertise of respondents of the feedback survey for the 3rd BEAT-PCD Conference & 4th Training School. ENT: ear, nose and throat specialist. The term “Researcher” includes epidemiologists; and “Other” includes pathologists, radiologists, microbiologists and patient representatives
See this image and copyright information in PMC

References

    1. Lucas JS, Alanin MC, Collins S, Harris A, Johansen HK, Nielsen KG, et al. Clinical care of children with primary ciliary dyskinesia. Expert Review of Respiratory Medicine. 2017;11:779–790. doi: 10.1080/17476348.2017.1360770. - DOI - PubMed
    1. Onoufriadis A, Paff T, Antony D, Shoemark A, Micha D, Kuyt B, et al. Splice-site mutations in the axonemal outer dynein arm docking complex gene CCDC114 cause primary ciliary dyskinesia. Am J Hum Genet. 2013;92:88–98. doi: 10.1016/j.ajhg.2012.11.002. - DOI - PMC - PubMed
    1. Kuehni CE, Frischer T, Strippoli M-PF, Maurer E, Bush A, Nielsen KG, et al. Factors influencing age at diagnosis of primary ciliary dyskinesia in European children. Eur Respir J. 2010;36(6):1248–58. - PubMed
    1. Goutaki M, Meier AB, Halbeisen FS, Lucas JS, Dell SD, Maurer E, et al. Clinical manifestations in primary ciliary dyskinesia: Systematic review and meta-analysis. European Respiratory Journal. 2016;48:1081–1095. doi: 10.1183/13993003.00736-2016. - DOI - PubMed
    1. Mullowney T, Manson D, Kim R, Stephens D, Shah V, Dell S. Primary Ciliary Dyskinesia and Neonatal Respiratory Distress. Pediatrics. 2014;134:1160–1166. 10.1542/peds.2014-0808. - PMC - PubMed

Publication types