News

The joint Conference and Training School was attended by over 100 delegates who networked and shared their research over a 4 day meeting. The meeting included key-note talks from international leaders in the field, training workshops and consensus working groups.

The ERS guidelines for the diagnosis of PCD were presented at a symposium at ERS Congress. Patient representative, Fiona Copeland explained the importance of an accurate diagnosis from the patients’ perspective and described the barriers to obtaining a diagnosis for this rare ‘orphan’ lung disease. Claudia Kuehni discussed the clinical features that should prompt referral for diagnostic testing and provided evidence that diagnosis is often missed or delayed. Heymut Orman explained the genetic basis of PCD. Jane Lucas presented Task Force’s recommendations for the commonly used screening and diagnostic tests: nasal nitric oxide, high-speed video microscopy, transmission electron microscopy, genotyping and immunofluorescence staining of ciliary proteins.

Joint meeting of BEAT-PCD and BESTCILIA

A joint meeting of BEAT-PCD and BESTCILIA provided an excellent networking opportunity for eighty-two delegates  with an interest in PCD. The meeting included state-of-the-art talks and discussion about research coordinated through the two projects. The speakers and delegates were from diverse backgrounds bringing together the expertise needed to develop clinical and research agendas to impact patients; pulmonologists, ENT, diagnostic scientists, geneticists, basic scientists, patient representatives, social scientists.

 Research Prizes to BEAT-PCD members at European Respiratory Society Congress, September 2015

Congratulations to Panayiotis Kouis who won the Respiratory Paediatric Assembly Epidemiology prize for his abstract “Diagnostic accuracy of nasal nitric oxide measurement for establishing diagnosis of primary ciliary dyskinesia: A systematic review and meta-analysis”. Also to Claire Jackson who won a British Lung Foundation/British Paediatric Respiratory Society ERS Travel Fellowship for her abstract: “Seasonal variation in success and ciliation of airway epithelial cells cultured at air-liquid interface; patients samples referred for primary ciliary dyskinesia testing."

PCD Research

PCD research was presented during ERS during 18 oral presentations, poster discussions and thematic posters.  The data included clinical progression in adults, use of immunofluorescence to detect radial spoke defects, caution of unselected screening using nNO, progression of lung function impairment with increased age and patient views on diagnostic testing.