Proceedings of the 2nd BEAT-PCD conference and 3rd PCD training school: part 1

Abstract

Primary ciliary dyskinesia (PCD) is a rare heterogenous condition that causes progressive suppurative lung disease, chronic rhinosinusitis, chronic otitis media, infertility and abnormal situs. ‘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 second BEAT-PCD conference, and third PCD training school were held jointly in April 2017 in Valencia, Spain. 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.Electronic supplementary materialThe online version of this article (10.1186/s12919-018-0098-9) contains supplementary material, which is available to authorized users.

Spirometric indices in primary ciliary dyskinesia: systematic review and meta-analysis

“…To meet this need, together with a network of international collaborators we are developing a standardised, disease-specific instrument for patient follow-up and prospective data collection [76,77]. At the same time, researchers in centers around the world are conducting a prospective multicentre observational study of variability of lung function in PCD patients (PROVALF-PCD) that will provide information on how FEV1 itself varies in individual stable PCD patients [78].…”

Standardised clinical data from patients with primary ciliary dyskinesia: FOLLOW-PCD

“…Working group FOLLOW-PCD was developed by a multidisciplinary, international working group of the BEAT-PCD (Better Experimental Approaches to Treat PCD) COST Action network (www.beatpcd.org/) [13][14][15]. BEAT-PCD is a European-led network of >250 scientists and clinicians from 25 countries, coordinating research to improve the care and diagnosis of PCD.…”

Registries and collaborative studies for primary ciliary dyskinesia in Europe

“…We identified the registries presented in discussion with the European PCD research community, which has collaborated closely for years in the PCD Task Forces of the European Respiratory Society (ERS) [15,[24][25][26][27], the European Union's Seventh Framework Programme (EU FP7) project BESTCILIA (Better Experimental Screening and Treatment for Primary Ciliary Dyskinesia; www.bestcilia.eu) and the BEAT-PCD (Better Experimental Approaches to Treat PCD; www.beatpcd.org) COST Action network [28,29]. Details are presented in tables 1-3.…”