The Canadian Bronchiectasis and Nontuberculous Mycobacteria Registry: a study protocol

Background Bronchiectasis is a complex, chronic disease with geographic and ethnic diversity. While the most substantial cohort studies have been conducted in Europe and the USA, Canada also faces considerable challenges. The comprehensive Canadian Bronchiectasis and Nontuberculous Mycobacterial (NT...

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Main Authors: Christina S. Thornton, Nicole Boechler, Vidhi Desai, Ranjani Somayaji, Swathi Purighalla, Sarah Brode, Theodore K. Marras, Ryan Cooper, Maeve Smith, Julie Jarand
Format: Article
Language:English
Published: European Respiratory Society 2024-11-01
Series:ERJ Open Research
Online Access:http://openres.ersjournals.com/content/10/6/00412-2024.full
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author Christina S. Thornton
Nicole Boechler
Vidhi Desai
Ranjani Somayaji
Swathi Purighalla
Sarah Brode
Theodore K. Marras
Ryan Cooper
Maeve Smith
Julie Jarand
author_facet Christina S. Thornton
Nicole Boechler
Vidhi Desai
Ranjani Somayaji
Swathi Purighalla
Sarah Brode
Theodore K. Marras
Ryan Cooper
Maeve Smith
Julie Jarand
author_sort Christina S. Thornton
collection DOAJ
description Background Bronchiectasis is a complex, chronic disease with geographic and ethnic diversity. While the most substantial cohort studies have been conducted in Europe and the USA, Canada also faces considerable challenges. The comprehensive Canadian Bronchiectasis and Nontuberculous Mycobacterial (NTM) Registry aims to 1) outline the clinical characteristics and natural history of bronchiectasis in Canada, 2) identify risk factors contributing to disease progression within Canadians, 3) integrate comprehensive clinical information to better understand the phenotypes of bronchiectasis and 4) support the development of large-scale, randomised controlled trials in Canada. Methods The Canadian Bronchiectasis and NTM Registry is an ongoing prospective, longitudinal, multi-centre, observational cohort study. It aims to enrol at least 2000 participants to collect data such as medical history, aetiological assessments, lung function tests, microbiological profiles, radiographic evaluations, comorbidities and quality of life (QoL) metrics. Participants will undergo annual follow-ups to gather longitudinal information regarding outcomes, treatments and changes in QoL. The inclusion criteria are a diagnosis of bronchiectasis by clinical history and computed tomography and/or pulmonary NTM infection as defined by American Thoracic Society/Infectious Diseases Society of America guidelines. The study's protocol received ethical approval from the lead site, the University of Calgary, with future additional approval from local ethics committees at all participating centres. Discussion The outcomes of the registry will be instrumental in uncovering the clinical traits and natural history of bronchiectasis. This longitudinal study will be used for analysis to form evidence-based clinical practices and serve as a resource in Canada to inform future studies in NTM and bronchiectasis.
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spelling doaj-art-8490b0155ce343a18e19abbd516f34da2025-01-14T09:50:21ZengEuropean Respiratory SocietyERJ Open Research2312-05412024-11-0110610.1183/23120541.00412-202400412-2024The Canadian Bronchiectasis and Nontuberculous Mycobacteria Registry: a study protocolChristina S. Thornton0Nicole Boechler1Vidhi Desai2Ranjani Somayaji3Swathi Purighalla4Sarah Brode5Theodore K. Marras6Ryan Cooper7Maeve Smith8Julie Jarand9 Department of Microbiology, Immunology and Infectious Diseases, Cumming School of Medicine University of Calgary, Calgary, AB, Canada Department of Microbiology, Immunology and Infectious Diseases, Cumming School of Medicine University of Calgary, Calgary, AB, Canada Department of Microbiology, Immunology and Infectious Diseases, Cumming School of Medicine University of Calgary, Calgary, AB, Canada Department of Microbiology, Immunology and Infectious Diseases, Cumming School of Medicine University of Calgary, Calgary, AB, Canada Department of Microbiology, Immunology and Infectious Diseases, Cumming School of Medicine University of Calgary, Calgary, AB, Canada University Health Network and University of Toronto, Toronto, ON, Canada University Health Network and University of Toronto, Toronto, ON, Canada Department of Medicine, Alberta Health Services, University of Alberta, Edmonton, AB, Canada Department of Medicine, Alberta Health Services, University of Alberta, Edmonton, AB, Canada Department of Medicine, Cumming School of Medicine, Alberta Health Services, University of Calgary, Calgary, AB, Canada Background Bronchiectasis is a complex, chronic disease with geographic and ethnic diversity. While the most substantial cohort studies have been conducted in Europe and the USA, Canada also faces considerable challenges. The comprehensive Canadian Bronchiectasis and Nontuberculous Mycobacterial (NTM) Registry aims to 1) outline the clinical characteristics and natural history of bronchiectasis in Canada, 2) identify risk factors contributing to disease progression within Canadians, 3) integrate comprehensive clinical information to better understand the phenotypes of bronchiectasis and 4) support the development of large-scale, randomised controlled trials in Canada. Methods The Canadian Bronchiectasis and NTM Registry is an ongoing prospective, longitudinal, multi-centre, observational cohort study. It aims to enrol at least 2000 participants to collect data such as medical history, aetiological assessments, lung function tests, microbiological profiles, radiographic evaluations, comorbidities and quality of life (QoL) metrics. Participants will undergo annual follow-ups to gather longitudinal information regarding outcomes, treatments and changes in QoL. The inclusion criteria are a diagnosis of bronchiectasis by clinical history and computed tomography and/or pulmonary NTM infection as defined by American Thoracic Society/Infectious Diseases Society of America guidelines. The study's protocol received ethical approval from the lead site, the University of Calgary, with future additional approval from local ethics committees at all participating centres. Discussion The outcomes of the registry will be instrumental in uncovering the clinical traits and natural history of bronchiectasis. This longitudinal study will be used for analysis to form evidence-based clinical practices and serve as a resource in Canada to inform future studies in NTM and bronchiectasis.http://openres.ersjournals.com/content/10/6/00412-2024.full
spellingShingle Christina S. Thornton
Nicole Boechler
Vidhi Desai
Ranjani Somayaji
Swathi Purighalla
Sarah Brode
Theodore K. Marras
Ryan Cooper
Maeve Smith
Julie Jarand
The Canadian Bronchiectasis and Nontuberculous Mycobacteria Registry: a study protocol
ERJ Open Research
title The Canadian Bronchiectasis and Nontuberculous Mycobacteria Registry: a study protocol
title_full The Canadian Bronchiectasis and Nontuberculous Mycobacteria Registry: a study protocol
title_fullStr The Canadian Bronchiectasis and Nontuberculous Mycobacteria Registry: a study protocol
title_full_unstemmed The Canadian Bronchiectasis and Nontuberculous Mycobacteria Registry: a study protocol
title_short The Canadian Bronchiectasis and Nontuberculous Mycobacteria Registry: a study protocol
title_sort canadian bronchiectasis and nontuberculous mycobacteria registry a study protocol
url http://openres.ersjournals.com/content/10/6/00412-2024.full
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