The European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC): experiences from a successful ERS Clinical Research Collaboration (original) (raw)
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The European respiratory journal, 2016
Bronchiectasis is a disease of renewed interest in light of an increase in prevalence and increasing burden on international healthcare systems. There are no licensed therapies, and large gaps in knowledge in terms of epidemiology, pathophysiology and therapy. The European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) is a European Respiratory Society (ERS) Clinical Research Collaboration, funded by ERS to promote high-quality research in bronchiectasis. The objective of this consensus statement was to define research priorities in bronchiectasis. From 2014 to 2015, EMBARC used a modified Delphi process among European bronchiectasis experts to reach a consensus on 55 key research priorities in this field. During the same period, the European Lung Foundation collected 711 questionnaires from adult patients with bronchiectasis and their carers from 22 European countries reporting important research priorities from their perspective. This consensus statement repo...
The EMBARC European Bronchiectasis Registry: protocol for an international observational study
ERJ Open Research, 2016
Bronchiectasis is one of the most neglected diseases in respiratory medicine. There are no approved therapies and few large-scale, representative epidemiological studies.The EMBARC (European Multicentre Bronchiectasis Audit and Research Collaboration) registry is a prospective, pan-European observational study of patients with bronchiectasis. The inclusion criterion is a primary clinical diagnosis of bronchiectasis consisting of: 1) a clinical history consistent with bronchiectasis; and 2) computed tomography demonstrating bronchiectasis. Core exclusion criteria are: 1) bronchiectasis due to known cystic fibrosis; 2) age <18 years; and 3) patients who are unable or unwilling to provide informed consent.The study aims to enrol 1000 patients by April 2016 across at least 20 European countries, and 10 000 patients by March 2020. Patients will undergo a comprehensive baseline assessment and will be followed up annually for up to 5 years with the goal of providing high-quality longitu...
RESPIRE: breathing new life into bronchiectasis
European Respiratory Journal
]. RESPIRE, definable as "the recovery of hope, courage and strength after a time of difficulty", is apt in the context of bronchiectasis therapy. Despite its recent renaissance, including the publication of the first international guidelines for the management of bronchiectasis, only a single treatment recommendation in the 2017 European Respiratory Society guidelines was supported by high-quality evidence [1]. This is a timely reminder of the real and challenging battle ahead, to deliver evidence-based appropriate and effective therapies to patients. In this issue of the European Respiratory Journal, a major "blow" in this battle has been struck and appears to have landed its intended target [2, 3]. The RESPIRE 1 and 2 trials evaluated 32.5 mg ciprofloxacin dry powder inhalation (DPI) administered twice daily versus placebo in two separate 2×2 arm trials. Taken together, these two trials represent the largest clinical trial programme ever conducted in bronchiectasis. Each trial studied a 14-and 28-day on/off drug regime over a 48-week period. The two trials differed by: 1) their enrolling countries; and 2) statistical handling of the data. RESPIRE 1 largely enrolled across Europe, North and South America, Australia and included Japan, while RESPIRE 2 focused on Asia and Eastern Europe. The inclusion criteria were the same for each set of trials, requiring patients with bronchiectasis infected with one of a list of the most commonly identified pathogens, and a history of ⩾2 exacerbations in the previous year. This article has been revised according to the correction published in the February 2018 issue of the European Respiratory Journal.
US Patient-Centered Research Priorities and Roadmap for Bronchiectasis
Chest, 2018
Noncystic fibrosis bronchiectasis (bronchiectasis) is an increasingly common chronic lung disease that is difficult to manage because of a lack of evidence on which to base treatment decision-making. We sought to develop a practical list of US-based patient-centered research priorities and an associated roadmap to guide bronchiectasis research. We designed and administered a web-based patient needs assessment survey to establish broad research priorities, convened three stakeholder webinars to confirm the top priorities, obtained written stakeholder feedback, and completed a final consensus survey of objectives. The stakeholder panel consisted of clinical research experts in bronchiectasis, a seven-member patient advisory panel, and representatives from the two key patient advocacy organizations: COPD Foundation and NTM Info and Research Inc. Based on survey results from 459 patients with bronchiectasis, the stakeholder panel identified 27 patient-centered research priorities for br...
European Respiratory Society guidelines for the management of adult bronchiectasis
European Respiratory Journal
Bronchiectasis in adults is a chronic disorder associated with poor quality of life and frequent exacerbations in many patients. There have been no previous international guidelines. The European Respiratory Society guidelines for the management of adult bronchiectasis describe the appropriate investigation and treatment strategies determined by a systematic review of the literature. A multidisciplinary group representing respiratory medicine, microbiology, physiotherapy, thoracic surgery, primary care, methodology and patients considered the most relevant clinical questions (for both clinicians and patients) related to management of bronchiectasis. Nine key clinical questions were generated and a systematic review was conducted to identify published systematic reviews, randomised clinical trials and observational studies that answered these questions. We used the GRADE approach to define the quality of the evidence and the level of recommendations. The resulting guideline addresses the investigation of underlying causes of bronchiectasis, treatment of exacerbations, pathogen eradication, long term antibiotic treatment, anti-inflammatories, mucoactive drugs, bronchodilators, surgical treatment and respiratory physiotherapy. These recommendations can be used to benchmark quality of care for people with bronchiectasis across Europe and to improve outcomes.
Adult Bronchiectasis Patients: A First Look at the United States Bronchiectasis Research Registry
Chest, 2016
We sought to describe the characteristics of adult bronchiectasis patients enrolled in the United States Bronchiectasis Research Registry (BRR). The BRR is a database of non-cystic fibrosis bronchiectasis (NCFB) patients enrolled at 13 sites within the United States. Baseline demographic, spirometric, imaging, microbiologic, and therapeutic data were entered into a central web-based database. Patients were subsequently analyzed by the presence NTM. We enrolled 1826 patients between 2008 and 2014. Patients were predominantly female (79%), white (89%), and never smokers (60%) with a mean age 64±14 years. Sixty-three percent of the patients had a history of NTM disease or NTM isolated at baseline evaluation into the BRR. NTM patients were older, predominantly female, and had bronchiectasis diagnosed at a later age than those without NTM. Gastroesophageal reflux (GERD) was more common in those with NTM whereas asthma, primary immunodeficiency and primary ciliary dyskinesia were more com...
The Bronchiectasis Toolbox—A Comprehensive Website for the Management of People with Bronchiectasis
Medical Sciences, 2017
While the health burden of bronchiectasis is increasing worldwide, medical and physiotherapy treatment strategies have progressed significantly over the past decade. For this reason, clinicians require readily accessible current evidence based information on the management of this condition. E-learning is a suitable educational forum for the development and maintenance of professional skills, however a comprehensive, evidence based, multidisciplinary website for bronchiectasis was not available. The Bronchiectasis Toolbox at www.bronchiectasis.com.au was developed by a team of clinicians in Australia and New Zealand with extensive experience in bronchiectasis. The content of this website, based on national and international guidelines, is presented under the headings: 'Bronchiectasis', 'Assessment', 'Physiotherapy', 'Indigenous', 'Paediatrics', and 'Resources'. Through a blend of multimedia resources, this website provides information to consolidate the knowledge and practical skills for health professionals caring for people with this condition. After launching in 2015 the website has received 64,549 hits from over 100 countries and the videos have been viewed 10,205 times in 89 countries. The Bronchiectasis Toolbox is a comprehensive multidisciplinary resource accessible to health professionals worldwide who manage people with bronchiectasis and is a unique solution to an educational need. Regular updates will ensure that the website continues to be relevant.
ERJ Open Research, 2021
The global burden of children and young people (CYP) with bronchiectasis is being recognised increasingly. They experience a poor quality of life and recurrent respiratory exacerbations requiring additional treatment, including hospitalisation. However, there are no published data on patient-driven clinical needs and/or research priorities for paediatric bronchiectasis.Parent/patient-driven views are required to understand the clinical needs and research priorities to inform changes that benefit CYP with bronchiectasis and reduce their disease burden. The European Lung Foundation and the European Respiratory Society Task Force for paediatric bronchiectasis created an international roadmap of clinical and research priorities to guide, and as an extension of, the clinical practice guideline.This roadmap was based on two global web-based surveys. The first survey (10 languages) was completed by 225 respondents (parents of CYP with bronchiectasis and adults with bronchiectasis diagnosed...
European Respiratory Journal
There is increasing awareness of bronchiectasis in children and adolescents, a chronic pulmonary disorder associated with poor quality of life for the child/adolescent and their parents, recurrent exacerbations, and costs to the family and health systems. Optimal treatment improves clinical outcomes. Several national guidelines exist, but there are no international guidelines.The European Respiratory Society (ERS) Task Force for the management of paediatric bronchiectasis sought to identify evidence-based management (investigation and treatment) strategies. It used the ERS standardised methodology that included a systematic review of the literature and application of the GRADE (Grading of Recommendations Assessment, Development and Evaluation) approach to define the quality of the evidence and level of recommendations.A multidisciplinary team of specialists in paediatric and adult respiratory medicine, infectious disease, physiotherapy, primary care, nursing, radiology, immunology, ...
European Respiratory Journal
Bronchiectasis is being diagnosed increasingly in children and adolescents. Recurrent respiratory exacerbations are common in children and adolescents with this chronic pulmonary disorder. Respiratory exacerbations are associated with an impaired quality of life, poorer long-term clinical outcomes, and substantial costs to the family and health systems. The 2021 European Respiratory Society (ERS) clinical practice guideline for the management of children and adolescents with bronchiectasis provided a definition of acute respiratory exacerbations for clinical use but to date there is no comparable universal definition for clinical research. Given the importance of exacerbations in the field, this ERS Task Force sought to obtain robust definitions of respiratory exacerbations for clinical research. The panel was a multidisciplinary team of specialists in paediatric and adult respiratory medicine, infectious disease, physiotherapy, primary care, nursing, radiology, methodology, patient...