About prognosis
To date, more than 2,000 patients with bronchiectasis have been enrolled in the German bronchiectasis registry PROGNOSIS (The Prospective German Non-CF-Bronchiectasis Registry). Enrolment of new patients has now closed, and follow-up is ongoing.
Objectives
The following objectives provide an overview of the key thematic priorities and intended developments within the PROGNOSIS project.
Establishment of a Germany-wide, representative, prospective and longitudinal patient registry. Over the first three years, 750 adult patients are to be recruited from 25–35 centres across the healthcare sector – ranging from respiratory practices to university hospitals.
Addressing key epidemiological questions, particularly regarding the distribution of aetiologies and the current state of care for non-CF bronchiectasis – including quality of life, health economics and pharmacoepidemiology.
Development of a structured framework for differential diagnosis and the identification of prognostic markers in non-CF bronchiectasis.
Improving access to future clinical trials for participating centres.
Development of German-language guidelines on the diagnosis and management of non-CF bronchiectasis in collaboration with the German Society of Pneumology and Respiratory Medicine (DGP) e.V.
Support for the establishment of a translational research network on non-CF bronchiectasis in Germany and Europe.
Participating centres
The PROGNOSIS initiative was initially launched by 17 founding centres, including all five sites of the German Centre for Lung Research (DZL). These founding centres now also serve as the scientific advisory board.
The Executive Board and the Steering Group
The PROGNOSIS Executive Board is responsible for the scientific management of the registry:
Prof. Dr. med. Felix C. Ringshausen
Klinik für Pneumologie und Infektiologie, Medizinische Hochschule Hannover
Prof. Dr. med. Jessica Rademacher
Klinik für Pneumologie und Infektiologie, Medizinische Hochschule Hannover
Dr. med. Pontus Mertsch
Assistenzarzt, Medizinische Klinik V
Klinikum der Unversität München
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 STIFTUNG
Dr. med. Isabell Pink
Klinik für Pneumologie und Infektiologie, Medizinische Hochschule Hannover
Dr. med. Jobst Röhmel
Klinik für Pädiatrie m.S. Pneumologie
und Immunologie mit Intensivmedizin
Charité – Universitätsmedizin Berlin
Dr. med. Ben Ole Staar
Assistenzarzt, Kinik für Pneumologie und Infektiologie, Medizinische Hochschule Hannover
Dr. med. Sivagurunathan Sutharsan
Klinik für Pneumologie, Universitätsmedizin Essen – Ruhrlandklinik, Westdeutsches Lungenzentrum am Universitätsklinikum Essen gGmbH
Dr. rer. nat. Annegret Zurawski, MBA
BREATH (Biomecial Research in End-stage and Obstructive Lung Disease)
Deutsches Zentrum für Lungenforschung
The 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, Großbritannien
Dr. James D. Chalmers
Wellcome Trust Postdoctoral Fellow, Lecturer in Respiratory Medicine, College of Life Sciences, University of Dundee, Großbritannien
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 Clínic 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 supported by the European Respiratory Society (ERS) as a Clinical Research Collaboration. The data from PROGNOSIS represent Germany within the European Bronchiectasis Registry (EMBARC).
Within the BREATH research network (Biomedical Research in End-Stage and Obstructive Lung Disease Hannover), a site of the German Centre for Lung Research (DZL), the topic of non-CF bronchiectasis is also a key priority. Together with DZL partner CAPNETZ STIFTUNG, BREATH supports the German bronchiectasis registry PROGNOSIS in its public relations work, data management and collaboration with the participating centres.
Of particular importance to PROGNOSIS is its close collaboration with patients affected by non-CF bronchiectasis, their patient organisations (Deutsche Atemwegsliga e.V., Deutsche Patienten-liga Atemwegserkrankungen e.V.) and a patient advisory group that advises the registry. PROGNOSIS offers affected patients a point of contact where relevant information is provided and where they are supported in organising themselves, thereby enabling them to positively influence the course of their illness.
The PROGNOSIS-Team
From left to right: Dr. Ben Ole Staar (Hannover Medical School (MHH)), Rika Zimmer (MHH), Dr. Raphael Ewen (MHH), Prof. Dr. Jessica Rademacher (MHH), PD Dr. Katja Höpker (University Medicine Mainz), Dr. Pontus Mertsch (LMU Klinikum München), Dr. Christopher Hinze (MHH), Prof. Dr. Felix Ringshausen (MHH), Dr. Jeremias Götschke (LMU Klinikum München), Julian Schlatzer (LMU Klinikum München), Dr. Melanie Götschke (LMU Klinikum München), Dr. Jobst Röhmel (Charité – University Medicine Berlin), Dr. Tina Büttner (MHH)
We would like to thank our partners:
Our sponsors:
