Table 2 Summary of six ongoing large registry studies on adults with bronchiectasis around the world

EMBARC

To develop a pan-European, multicentre bronchiectasis registry incorporating baseline data collection with annual follow-up data for at least 5 years; to describe the demographics, comorbidities, aetiology, medication usage, resource consumption, exacerbations, microbiology, severity and prognosis of bronchiectasis across Europe; to facilitate multinational cooperation, within and outwith Europe; to facilitate the creation of national registries in European countries that currently do not have a bronchiectasis research infrastructure

A minimum of 20 European countries

Adults with a clinical history consistent with bronchiectasis and computed tomography demonstrating bronchiectasis affecting one or more lobes

Estimated to enroll 10,000 patients by March 2020, and has enrolled more than 19,000 patients as of October 2021

Yes

2012–ongoing

Up to 5 years

KMBARC

To describe of the clinical characteristics, including patient demographics, phenotype, aetiology, progression, treatment and prognosis, of Korean patients with bronchiectasis; to evaluate of disease burden, including use of medication and medical resources, acute exacerbation, hospitalisation and mortality, in Korean patients with bronchiectasis; to evaluate of the rare aetiology of bronchiectasis (e.g., allergic bronchopulmonary aspergillosis, rheumatoid arthritis and tuberculosis); to elucidation of risk factors associated with acute exacerbation and prognosis

More than 26 hospitals in South Korea

Adults with computed tomography demonstrating bronchiectasis affecting one or more lobes regardless the presence of respiratory symptoms or not

At least 1200 patients over the study period

No

August 2018–ongoing

Up to 5 years

BronchUK

To develop a multicentre bronchiectasis registry incorporating baseline data collection with annual follow-up data for at least 5 years; to facilitate the creation of a biobank in bronchiectasis to underpin future mechanistic studies; to describe the treatment patterns across the UK, phenotypic data, comorbidities and healthcare use; to facilitate multinational cooperation, especially with EMBARC, within academia and with industry to develop new discoveries; to develop key partnerships with experts not currently working in bronchiectasis to optimally use the datasets

At least nine secondary care centres within UK

Adults with a clinical history consistent with bronchiectasis and computed tomography demonstrating bronchiectasis

A minimum of 1500 patients

Yes

November 2014–ongoing

A maximum of 5 years

US Registry

To support collaborative research and assist in the planning of multi-center clinical trials for the treatment of NTM and non-CF Bronchiectasis; to provide better insight into the study of the different types of Bronchiectasis, as well as the pathophysiology of the disorder

17 active sites in the United States

Adults with a physician-established diagnosis of bronchiectasis

Estimated to enroll 5000 patients, and has enrolled more than 4000 patients as of October 2021

Unknown

2007–ongoing

Up to 20 years

Australian Registry

To understand the cause, incidence and prevalence of bronchiectasis; to explore the burden of illness and of treatment; to support the exploration of innovative treatments; to improve quality of life and offer opportunities for consumer engagement; to identify the economic impact of bronchiectasis on an individual and our community; to maximise equity of access for all Australians to bench marked, evidence-based management for bronchiectasis

At least 14 sites across the Australian mainland

Australian adults and children with a physician diagnosis of bronchiectasis with abnormal bronchial dilatation demonstrated on computed tomography chest scan

Unknow

Unknown

2015–ongoing

Up to 5 years

Indian Registry

To advance research and improve clinical care for patients with non-cystic fibrosis bronchiectasis in India

At least 31 centres across India

Adults with a clinical history consistent with bronchiectasis and computed tomography demonstrating bronchiectasis affecting one or more lobes

Unknow (has enrolled more than 2195 patients as of September 2017)

Unknown

May 2015–ongoing

Up to 5 years

RIBRON

To obtain information from bronchiectasis patients to improve the knowledge of the disease in Spain; to facilitate and promote multicenter and multidisciplinary research in bronchiectasis; to identify groups of patients who may be candidates for future clinical trials; to assess the follow-up of Spanish bronchiectasis clinical guide-lines and recommendations in the attempt to standardize and improve patient management

43 hospitals located throughout Spain

Adults with a clinical picture consistent with bronchiectasis of any etiology (including cystic fibrosis) diagnosed with chest high-resolution computed tomography

Unknow (has enrolled more than 2300 patients as of July 2019)

No

February 2015–ongoing

Unknow