4th BEAT-PCD newsletter November 2017
3rd BEAT-PCD newsletter August 2017
2nd BEAT-PCD newsletter June 2017
BEAT-PCD meeting during ERS Congress, Milan 2017. SAVE THE DATE.
Saturday 9th September 1300-1700 hours: Aula Magna of Mangiagalli Clinic of the University of Milan (organising committee: Claudia Kuehni, Maria Francesca Patria & Francesca Santamaria)
BEAT-PCD Conference and Training School, Valencia Spain April 2017
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.
7th International Meeting on Pulmonary Rare Diseases, Milan February 2017
Jane Lucas, Chair of BEATPCD, spoke about primary ciliary dyskinesia.
European Respiratory Society Task Force for Diagnosis of PCD, ERS Congress London, September 2016
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 at European Respiratory Society Congress Amsterdam, September 2015
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 at European Respiratory Society Congress, September 2015
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.