The Necessity of Bronchiectasis Registries - The Turkish Registry of Bronchiectasis

Bronchiectasis demonstrates a significant discrepancy between its high prevalence and the limited evidence base.Patient registries, both national and international, are key to collecting comprehensive data.However, the cost-effectiveness of this approach remains a subject of ongoing debate. 1 In the opinion of the authors of this editorial, despite the significant costs and effort involved in establishing such registries, they are justified-provided that certain key characteristics are met.The registry must be sufficiently comprehensive in capturing relevant variables to avoid missing critical data that could impede meaningful research, particularly in areas such as therapeutic interventions, comorbidities, microbiological findings, and prognostic factors.Given the geographic diversity of bronchiectasis, registries should reflect regional or national characteristics.Currently, 15 bronchiectasis registries are active worldwide.The largest registries are the European (EMBARC, ~20,000 patients), the Chinese (~16,000 patients), and the U.S. (~8,000 patients).Several countries, including Spain, India, Germany, Italy, Australia, South Korea, Japan, Trkiye, and the U.K. (closed in 2023), have data on over 1,000 patients.Others, such as Argentina, New Zealand, Canada, and Brazil, are still in the early stages. 2In Spain, an earlier registry (2002)(2003)(2004)(2005)(2006)(2007)(2008)(2009)(2010)(2011) included 2,123 patients from 36 centers, 3 while the ongoing RIBRON registry (since 2015) has data on 2,631 patients from 42 centers with over 7 years of follow-up. 4 A significant advancement in this field in Trkiye has been the development of the "Turkish Adult Bronchiectasis Database" (TEBVEB), established with support from the Turkish Thoracic Society (Figure 1). 5 TEBVEB is a webbased registry designed to collect detailed demographic, clinical, and microbiological data on Turkish patients with bronchiectasis.Between March 2019 and January 2022, 1,035 adult patients with bronchiectasis were enrolled at 25 centers.This study is the first multicenter prospective investigation of the sociodemographic and clinical characteristics of patients with bronchiectasis in Trkiye.The findings suggest that patients in Trkiye are diagnosed at a younger age

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Journal
Thoracic research and practice
Published
2026-01-20
DOI
https://doi.org/10.4274/thoracrespract.2025.2025-5-4
Primary Topic
Cystic Fibrosis Research Advances
Type
article
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article

The Necessity of Bronchiectasis Registries - The Turkish Registry of Bronchiectasis

Ebru Çakır Edis, Miguel Ángel Martínez-García, Oğuz Kılınç, Ayşın Şakar Coşkun et al.
Thoracic research and practice
Cystic Fibrosis Research Advances
article

The Necessity of Bronchiectasis Registries - The Turkish Registry of Bronchiectasis

Ebru Çakır Edis, Miguel Ángel Martínez-García, Oğuz Kılınç, Ayşın Şakar Coşkun, Sedat Çiçek
article en

Abstract

Bronchiectasis demonstrates a significant discrepancy between its high prevalence and the limited evidence base.Patient registries, both national and international, are key to collecting comprehensive data.However, the cost-effectiveness of this approach remains a subject of ongoing debate. 1 In the opinion of the authors of this editorial, despite the significant costs and effort involved in establishing such registries, they are justified-provided that certain key characteristics are met.The registry must be sufficiently comprehensive in capturing relevant variables to avoid missing critical data that could impede meaningful research, particularly in areas such as therapeutic interventions, comorbidities, microbiological findings, and prognostic factors.Given the geographic diversity of bronchiectasis, registries should reflect regional or national characteristics.Currently, 15 bronchiectasis registries are active worldwide.The largest registries are the European (EMBARC, ~20,000 patients), the Chinese (~16,000 patients), and the U.S. (~8,000 patients).Several countries, including Spain, India, Germany, Italy, Australia, South Korea, Japan, Trkiye, and the U.K. (closed in 2023), have data on over 1,000 patients.Others, such as Argentina, New Zealand, Canada, and Brazil, are still in the early stages. 2In Spain, an earlier registry (2002)(2003)(2004)(2005)(2006)(2007)(2008)(2009)(2010)(2011) included 2,123 patients from 36 centers, 3 while the ongoing RIBRON registry (since 2015) has data on 2,631 patients from 42 centers with over 7 years of follow-up. 4 A significant advancement in this field in Trkiye has been the development of the "Turkish Adult Bronchiectasis Database" (TEBVEB), established with support from the Turkish Thoracic Society (Figure 1). 5 TEBVEB is a webbased registry designed to collect detailed demographic, clinical, and microbiological data on Turkish patients with bronchiectasis.Between March 2019 and January 2022, 1,035 adult patients with bronchiectasis were enrolled at 25 centers.This study is the first multicenter prospective investigation of the sociodemographic and clinical characteristics of patients with bronchiectasis in Trkiye.The findings suggest that patients in Trkiye are diagnosed at a younger age

Thoracic research and practiceVol. 27(1)
Trakya University (TR), Izmir University (TR), İzmir University of Economics (TR), Manisa Celal Bayar University (TR), Instituto de Salud Carlos III (ES), University of Kara (TG), Centro de Investigación Biomédica en Red (ES)
Openalex Percentile: Top 84%
Cystic Fibrosis Research Advances
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