The PROspective German NOn-CF bronchiectaSIS Patient Registry

Hannover Medical School750 enrolled

Overview

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.

* 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

Study Type

OBSERVATIONAL

Enrollment

750

Conditions

Bronchiectasis

Eligibility

Sex: ALLMin age: 18 Years

Medical Language ↔ Plain English

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

Locations (19)

Outcomes

Primary Outcomes

Number of participants with non-CF bronchiectasis (NCFB) across all different levels of health care regarding the current management of NCFB in Germany

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.

Time frame: three years

Secondary Outcomes

Prevalence of non-CF bronchiectasis (NCFB) etiologies (composite outcome measures) across all different levels of health care

* 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

Time frame: three years

Central Contacts

Grit Barten

CONTACT

+49 511 5324434 prognosis@capnetz.de

Data from ClinicalTrials.gov

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