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A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting
Published on: January 12, 2018
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US Patient-Centered Research Priorities and Roadmap for Bronchiectasis
Emily Henkle1, Timothy R Aksamit2, Charles L Daley3
1OHSU-PSU School of Public Health, Portland, OR.
Chest
|July 9, 2018
Summary
This study identifies 27 patient-centered research priorities for noncystic fibrosis bronchiectasis, focusing on treatment, exacerbations, quality of life, and prognosis. These findings will guide future research and clinical trial development for this chronic lung disease.
Area of Science:
- Pulmonology
- Clinical Research
- Patient-Centered Outcomes
Background:
- Noncystic fibrosis bronchiectasis is a growing chronic lung condition with limited evidence-based treatment guidelines.
- Effective management is hindered by a lack of clear research directions.
Purpose of the Study:
- To develop a practical list of US-based, patient-centered research priorities for bronchiectasis.
- To create a roadmap to guide future bronchiectasis research initiatives.
Main Methods:
- A web-based survey assessed patient needs and established initial research priorities.
- Stakeholder webinars and feedback sessions refined these priorities.
- A consensus survey finalized 27 key research objectives with patient input.
Main Results:
- 459 patients with bronchiectasis participated in the initial survey.
- Identified 27 research priorities across treatment, exacerbation management, quality of life, prognosis, and clinical trial design.
- Priorities emphasize patient-reported outcomes in new and existing therapies.
Conclusions:
- The identified priorities will inform the development and evaluation of bronchiectasis therapies.
- Focus on patient-reported outcomes is crucial for advancing bronchiectasis care.
- Significant progress in bronchiectasis research is anticipated in the coming decade.
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