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U.S. patient-centered research priorities and roadmap for bronchiectasis.

著者 Henkle E , Aksamit TR , Daley CL , Griffith DE , O'Donnell AE , Quittner AL , Malanga E , Prieto D , Leitman A , Winthrop KL
Chest.2018 Jul 05 ; ():.
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Non-cystic fibrosis bronchiectasis ("bronchiectasis") is an increasingly common chronic lung disease that is difficult to manage due to a lack of evidence on which to base treatment decision-making. We sought to develop a practical list of U.S.-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 7-member Patient Advisory Panel, and representatives from the two key patient advocacy organizations: COPD Foundation and NTM Info & Research (NTMir). Based on survey results from 459 bronchiectasis patients, 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.
PMID: 29981718 [PubMed - as supplied by publisher]
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