About prognosis
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
The aims of PROGNOSIS include:
Establishment and development of a Germany-wide, representative, prospective, observational (non-interventional) and longitudinal patient registry. Within the first three years, at least 750 adult patients will be recruited from 25–35 centers across all sectors, ranging from pulmonary practices to university hospitals.
Answering key epidemiological questions, including the distribution of etiologies and the collection of data on the current state of care for non-CF bronchiectasis, covering aspects such as quality of life, health economics and pharmacoepidemiology.
Development of a structured framework for differential diagnostics as well as the identification of prognostic markers in non-CF bronchiectasis.
Facilitating access to future clinical studies for participating centers.
Development of a German-language guideline for the diagnosis and management of non-CF bronchiectasis in collaboration with the German Respiratory Society (DGP).
Supporting the establishment of a translational research network for non-CF bronchiectasis in Germany and across Europe.
Participating Centers
Die Initiative für PROGNOSIS ging zunächst von 17 Gründungszentren aus, unter ihnen alle 5 Standorte des Deutschen Zentrums für Lungenforschung (DZL). Die Gründungszentren fungieren heute auch als wissenschaftlicher Beirat.
Die Rekrutierung innerhalb von PROGNOSIS begann im Sommer 2015.
Die seitdem gewachsene Anzahl der 38 teilnehmenden Zentren, darunter pneumologische Praxen, Fachkliniken/ Lehrkrankenhäuser und Universitätskliniken, verfolgten die gemeinsamen Ziele, innerhalb des ersten Jahres 250 und nach drei Jahren 750 Patienten zu gewinnen. Beides erfolgreich.
The Board and Steering Committee
The PROGNOSIS Board is responsible for the scientific management of the Registry:
Prof. Dr. med. Felix C. Ringshausen
Department of Respiratory Medicine and Infectious Diseases, Hannover Medical School (MHH)
Prof. Dr. med. Jessica Rademacher
Department of Respiratory Medicine and Infectious Diseases, Hannover Medical School (MHH)
Dr. med. Pontus Mertsch
Assistant Physician, Department of Internal Medicine V
University Medical Center Munich
The PROGNOSIS Steering Committee supports the Board in the areas of study management, epidemiology, health services research, statistics, public relations and patient issues.
The members also advise the Board on all important decisions regarding the Registry.
Dipl.-Chem. Grit Barten, MBA
CAPNETZ FOUNDATION
Dr. med. Isabell Pink
Department of Respiratory Medicine and Infectiology, Hannover Medical School
Dr. med. Jobst Röhmel
Department of Pediatric Respiratory Medicine,
Immunology and Critical Care Medicine
at Charité University Hospital Berlin
Dr. med. Ben Ole Staar
Assistant Physician, Department of Respiratory Medicine and Infectious Diseases, Hannover Medical School (MHH)
Dr. med. Sivagurunathan Sutharsan
Department of Respiratory Medicine, University Medicine Essen – Ruhrlandklinik, West German Lung Center at the University Medical Center Essen gGmbH
Dr. rer. nat. Annegret Zurawski, MBA
BREATH (Biomecial Research in End-stage and Obstructive Lung Disease)
German Center for Lung Research (DZL)
International Advisory Board
Dr. Stefano Aliberti
Department of Biomedical Sciences, Humanitas University, IRCCS Humanitas Research Hospital, Milan, Italy
Dr. Diana Bilton
Consultant respiratory physician, Honorary senior lecturer, Imperial College London, Royal Brompton Hospital, London, GroĂźbritannien
Dr. James D. Chalmers
Wellcome Trust Postdoctoral Fellow, Lecturer in Respiratory Medicine, College of Life Sciences, University of Dundee, GroĂźbritannien
Dr. Holger Flick
Oberarzt, Klinische Abteilung für Pulmonologie, Universitätsklinik für Innere Medizin, LKH Universitätsklinikum, Graz, Österreich
Dr. Sebastian Ott
Spitalfacharzt I, Universitätsklinik für Pneumologie, Inselspital, Bern, Schweiz
Dr. Eva Polverino
Respiratory Diseases Department, Institut ClĂnic del Tòrax, Hospital Clinic i Provincial de Barcelona, Barcelona, Spanien
Prof. Dr. Gernot Rohde
Associate Professor, Department of Respiratory Medicine, Maastricht University Medical Center, Maastricht, Netherlands
The Partners
PROGNOSIS works closely with the European bronchiectasis registry EMBARC (The European Multicentre Bronchiectasis Audit and Research Collaboration, www.bronchiectasis.eu), which is sponsored by the European Respiratory Society (ERS) as a Clinical Research Collaboration. The data from PROGNOSIS represent Germany within the European bronchiectasis registry EMBARC.
In the research network BREATH (Biomedical Research in Endstage and Obstructive Lung Disease Hannover), site of the German Center for Lung Research (DZL), the issue of non-CF bronchiectasis (NCFB) also has high priority. Together with the DZL partner CAPNETZ FOUNDATION, BREATH supports the German bronchiectasis registry PROGNOSIS with its public relations work, data management and cooperation with the participating centers.
Of particular importance for PROGNOSIS is the intensive cooperation with the non-CF-affected patients, their patient organizations (Deutsche Atemwegsliga e.V., Deutsche Patientenliga Atemwegserkrankungen e.V.) and a patient group advising the registry. PROGNOSIS offers affected patients a contact point providing relevant information and support in organizing themselves in order to be able to favorably influence the course of the disease.
The PROGNOSIS-Team
f.l.t.r. Dr. Andrés de Roux (Center for Respiratory Medicine at the Charlottenburg Palace, Berlin), Dr. Annegret Zurawski (Managing Director BREATH – Member of the German Center for Lung Research (DZL)), Prof. Dr. Roland Diel (LungenClinic Grosshansdorf, Grosshansdorf), Dr. Eva Polverino (Hospital Clinic de Barcelona, Spanin), Dr. Jessica Rademacher (Department of Respiratory Medicine, Hannover Medical School), Grit Barten (Managing Director CAPNETZ FOUNDATION, Hannover), Dr. Felix C. Ringshausen (Department of Respiratory Medicine, Hannover Medical School)
We would like to thank our partners:
Our sponsors:
