PROGNOSIS - das deutsche Bronchiektasen-Register

Abstract

Bronchiectasis not due to cystic fibrosis (Non-CF bronchiectasis) represents a heterogeneous disorder with many different underlying diseases. Reliable and mature data referring to prevalence and incidence of Non-CF bronchiectasis in Germany are lacking. Bronchiectasis is often mentioned as rare or orphan disease, although it might be more often than supposed to be. Up to now (May 2015) there is no approved therapy for this disease in Germany. After some preliminary work the German bronchiectasis registry PROGNOSIS (The PROspective German NOn-CF bronchiectaSIS patient registry) will start recruiting patients by the beginning of July. The goals of PROGNOSIS are to build up a national, representative, prospective, observing (non-interventional) and longitudinal patient registry with at least 750 patients within three years in 25-35 centers, to evaluate important epidemiological questions. In addition a German-language guideline for diagnostic and management of Non-CF bronchiectasis will be developed in cooperation with the German respiratory society (DGP).