In the second quarter of 2015, the German Bronchiectasis Registry PROGNOSIS (The Prospective German Non-CF Bronchiectasis Registry) started recruiting the first patients. Adult patients with bronchiectasis not caused by cystic fibrosis (CF) have been included in the registry. By the end of 2016, already more than 600 patients had been recruited.
The aims of PROGNOSIS include:
• the establishment and development of a German-wide, representative, prospective, observational (non-interventional) and longitudinal patient registry, with recruitment into the database within 3 years of at least 750 adult patients from 25-35 centers from all sectors, i.e. from pulmonary practices right through to university hospitals,
• answering important epidemiological questions, e.g. the distribution of etiologies and acquisition of data on the current situation in the treatment of non-CF bronchiectasis (including quality of life, health economics and pharmacoepidemiology),
• the establishment of a rational scheme for differential diagnostics and prognostic markers for non-CF bronchiectasis,
• the facilitation of access to future clinical studies for the participating centers,
• setting up a guideline in German for the diagnostics and management of non-CF bronchiectasis in cooperation with the German Respiratory Society (DGP),
• supporting the establishment of a translational research network for non-CF bronchiectasis in Germany and Europe.