PROGNOSIS – the German Bronchiectasis Registry

Impressively, biomedical research and resulting innovations have improved the prognosis of patients with cystic fibrosis (CF) over the past decades. While bronchiectasis is the hallmark of CF lung manifestation, there is still no approved pharmacotherapy available for the treatment of bronchiectasis not associated with CF. Consequently, bronchiectasis is considered one of the most neglected diseases in respiratory medicine, with a great lack of research and an urgent need to determine the optimal management strategies. Recently, we provided first epidemiological evidence on the burden and the prevalence of bronchiectasis in Germany, clearly demonstrating that bronchiectasis is not an orphan disease and that it is associated with increasing healthcare unsafe [1, 2]. In order to advance research in the field of bronchiectasis we proposed the German Bronchiectasis Registry PROGNOSIS, which is aligned and collaborating with EMBARC, the European Bronchiectasis Registry. The main objectives of PROGNOSIS are: Currently, after having started recruitment in summer 2015 PROGNOSIS is well inline with the projected milestone of 250 recruited patients within the first year, with 30 centers actively participating. References: [1] Ringshausen FC, de Roux A, Pletz MW, Hamalainen N, Welte T, Rademacher J. Bronchiectasis-associated hospitalizations in Germany, 2005 – 2011: a population-based study of disease burden and trends. PLoS One. 2013;8(8):e71109 [2] Ringshausen FC, de Roux A, Diel R, Hohmann D, Welte T, Rademacher J. Bronchiectasis in Germany: a population-based estimation of disease prevalence. Eur Respir J. 2015 Dec;46(6):1805 – 7