Since 2015, patients have been included in the German Bronchiectasis Registry PROGNOSIS, whose bronchiectasis condition was not caused by mucoviscidosis (cystic fibrosis - CF). Bronchiectasis is a long-term condition where the airways of the lungs become abnormally widened, leading to a build-up of excess mucus and phlegm that can lead to a persistent cough, emaciation and chronic inflammation. Despite the patients‘ high level of stress and the frequently complex and time-consuming therapy, this disease has for a long time received little attention. 
In 2015, both the European Bronchiectasis Registry EMBARC and the German Registry PROGNOSIS became operational. Only since then has work been done to clarify epidemiological questions, such as age and gender distribution, the origin of the disease, its microbiology and forms of treatment. PD Dr. Jessica Rademacher and PD Dr. Felix Ringshausen, both researchers at the German Center for Lung Research (DZL), manage PROGNOSIS, that is based at Hannover Medical School. They are involved in the European activities and, with their experience in the German Registry, have contributed towards developing a European guideline for dealing with non-CF bronchiectasis. „One of our next goals is to develop a German guideline for the diagnosis and management of non-CF bronchiectasis, taking into account the German conditions and peculiarities of our health system“, explained Dr. Rademacher.
Until now, PROGNOSIS was financed, among others, by BREATH, the Hannover site of the DZL. Since 2017, the Registry has been an associated partner of the DZL. „Already since the inclusion of PROGNOSIS as an associate partner of the DZL, it has been the aim to establish a bridge between the DZL and the German Center for Infection Research (DZIF)“, Dr. Ringshausen explained. That this could now be realised through the financing of the development of a biomaterials library with funding by the DZIF, is an important milestone for PROGNOSIS and the cooperation between the DZL and DZIF. 
The DZL and DZIF belong to the six German Centers of Health Research (DZG), that were established in 2011 by the Federal Ministry of Education and Research (BMBF). It is the aim of the DZG to promote the research of widespread diseases such as cancer, cardiovascular, metabolic, infectious, pulmonary or neurodegenerative diseases and thus improve the quality of life of the patients. An important part of this work is the interdisciplinary cooperation amongst the centers and the partnership of the DZL and DZIF in the Bronchiectasis Registry PROGNOSIS is an excellent example of this.
 

Text: BREATH/AB

Photo: MHH/ Figiel