At a satellite of the 2022 European Respiratory Society (ERS) annual meeting in Barcelona, a joint meeting of the ERS-sponsored BEAT-PCD Clinical Research Consortium and the European Reference Network ERN-LUNG was held on 03/09/22, to engage clinicians, researchers and patient advocacy representatives in a first face to face meeting together since the pandemic.
Hosted by Antonio Moreno-Galdó at the Vall d’Hebron Medical School, this brought together two major European scientific networks in support of clinical translational research into the primary ciliary dyskinesia group of motile ciliopathies.
A morning training school provided a refresher on PCD management and diagnostic testing including by LCI, immunofluorescence and genetic testing, with a PCD research update from Claire Hogg. The afternoon research meeting kicked off with a joint patient perspective given by Lucy Dixon (PCD Support) and Trini Lopez Fernandez (Spanish Association of Patients with PCD). It included a plenary lecture from Eric Haarman on PCD research milestones, followed by updates on research involving the ERN-LUNG PCD Registry (nNO, genotype-phenotype, siblings and exacerbation studies) and Clinical Trials Network (CTN), as well as standardising of procedures for clinical trial output measures. In updates from the BEAT-PCD CRC, the new CiliaVar online genetic database was presented, as well as project updates on EPIC-PCD (upper airway study), COVID-PCD study and a report on the clinical trial Core Outcome Set (COS) consensus guidelines.
By Hannah Mitchison, Chair of Ciliopathy Alliance