Abstract
Introduction: One of the aims of the European Bronchiectasis Registry is to improve service provision and care for bronchiectasis across Europe. The first step in this process is to understand how bronchiectasis care is currently delivered in European centres.Methods: Sites participating in the bronchiectasis registry completed a web-based registration questionnaire detailing their available resources, estimated number of patients and provision of specialist services.Results: Until February 2014, 206 centres registered to participate in the European bronchiectasis registry representing an estimated 26,898 patients from 33 European countries. The largest centre reported >1000 patients (UK) with the smallest reporting 4 patients (Latvia). Mean number of patients per centre was 130 but with large variations. Very large services (>300 patients) were reported in the UK, Spain, Italy, Netherlands, Ukraine, Georgia, Moldova and Israel. 63% reported having a dedicated specialist bronchiectasis clinic while 37% managed their patients in general respiratory clinics. 66% of sites kept data on their patients in a local database.10% of centres managed their patients as part of a cystic fibrosis(CF) clinic, 45% also managed CF patients but kept these patients separate, while 45% did not manage CF patients. 54% had previously recruited to clinic trials in bronchiectasis.Conclusions: Baseline characteristics of centres managing bronchiectasis patients in Europe show substantial heterogeneity, both between and within countries. Understanding this heterogeneity will be important as patient characteristics and outcome data are recorded through 2015 and beyond.