Bronchiectasis
Conditions
Keywords
Prognosis, Prospective Study, Quality of Life, Radiology, Rehabilitation, Registry;, Signs and Symptoms, Therapy, Bronchiectiasis, Diagnosis, Epidemiology, Etiology, Longitudinal Study, Microbiology
Brief summary
The purpose of this study is to study the epidemiology of non-CF bronchiectasis (NCFB) and to provide an estimate of the distribution (prevalence) of NCFB etiologies across all different levels of health care as well as real-life data regarding the current management of NCFB in Germany.
Detailed description
* To study the epidemiology of non-CF bronchiectasis (NCFB) and to provide an estimate of the distribution (prevalence) of NCFB etiologies across all different levels of health care as well as real-life data regarding the current management of NCFB in Germany * To establish feasible investigational strategies in order to establish the etiology of NCFB * To perform observational research into bronchiectasis, particularly in areas where single center datasets are underpowered, such as in rare etiologies or determining markers of prognosis * To promote collaborative clinical, basic and translational research in NCFB between German (and European) centers * To provide a registry of well phenotyped patients with NCFB in clinical centers potentially eligible for enrolment into clinical trials * To track access to healthcare and cost of caring for patients with NCFB over time
Interventions
None listed
Sponsors
CAPNETZ Stiftung
German Center for Lung Research
Hannover Medical School
Study design
Observational model
CASE_ONLY
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* A clinical history consistent with bronchiectasis * (High resolution) computed tomography (CT) scan of the chest demonstrating bronchiectasis affecting 1 or more lobes
Exclusion criteria
* Bronchiectasis due to known cystic fibrosis (CF) * Age \<18 years * Interstitial lung disease * Prior lung or heart-lung transplantation
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Number of participants with non-CF bronchiectasis (NCFB) across all different levels of health care regarding the current management of NCFB in Germany | three years | To establish a national, representative, prospective, observational and longitudinal NCFB database and collaborative research network with a database including a minimum of 750 patients from a minimum of 25 centers from all levels of healthcare across Germany after a period of 3 years. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Prevalence of non-CF bronchiectasis (NCFB) etiologies (composite outcome measures) across all different levels of health care | three years | * Distribution (prevalence) of underlying conditions/etiologies * Clinical presentation of NCFB * Predictors of lung function decline in patients with NCFB * Diagnostics employed in determining the etiology of NCFB * Microbiology of NCFB * Radiology of NCFB * Comorbidity in patients with NCFB * Impact of exacerbations and hospitalizations on the clinical course of NCFB * Prescription patterns of pharmacological respiratory treatments for NCFB * Usage and benefit of surgical procedures in NCFB * Physical therapy and rehabilitation * Healthcare utilization and associated costs in NCFB * QOL(Questions of Life) among patients with NCFB * survival/mortality of NCFB |
Countries
Germany
Contacts
Primary ContactGrit Barten
Outcome results
None listed