• Emily Henkle, Timothy R Aksamit, Charles L Daley, David E Griffith, Anne E O'Donnell, Alexandra L Quittner, Elisha Malanga, Delia Prieto, Amy Leitman, and Kevin L Winthrop.
• OHSU-PSU School of Public Health, Portland, OR. Electronic address: henkle@ohsu.edu.
• Chest. 2018 Nov 1; 154 (5): 1016-1023.

AbstractNoncystic 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 bronchiectasis in the areas of bronchiectasis treatment and prevention of exacerbations, improving treatment of exacerbations and infections, improving health-related quality of life, predictors of poor prognosis, understanding the impact of underlying conditions, and conducting patient-centered clinical trials. These priorities should further inform the development and evaluation of both new and previously unproven therapies, with particular attention to the inclusion of patient-reported outcomes. We anticipate a great deal of progress will be made in the field of bronchiectasis in the next decade.Copyright © 2018 American College of Chest Physicians. Published by Elsevier Inc. All rights reserved.

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