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  • Research & Results
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  • Non-Cystic Fibrosis (CF) Bronchiectas...

Non-Cystic Fibrosis (CF) Bronchiectasis Patient Network and Research Roadmap

Project Summary  

Non-cystic fibrosis (CF) bronchiectasis is a rare, chronic, inflammatory lung disease that has a marked impact on quality of life and predominantly affects females and older adults. There is no non-CF bronchiectasis-specific patient advocacy or education group, but the COPD Foundation established the Bronchiectasis Research Registry (BRR) which enrolls patients into a researcher-driven, consolidated clinical database. Patients have expressed an increasing desire to provide input on research priorities and therapeutic study development. We will create a network of non-CF bronchiectasis patients (NCFB-NET) and an online community of non-CF bronchiectasis patients, healthcare providers, and researchers on the COPD Foundation-hosted “bronch360social” website. With key collaborator and NCFB-NET patient feedback we will generate a patient roadmap to guide BRR analysis and future therapeutic research.

The projected outputs from this project are the development of an interactive online community (bronch360social) and associated network of bronchiectasis patients and stakeholders (NCFB-NET); conducting a needs assessment survey; and creation of a roadmap of PCOR priorities for non-CF bronchiectasis research.

Project collaborators include the COPD Foundation; NTMir; BRRC Investigators; patient advisory panel; and patients and stakeholders who are part of NCFB-NET and the bronch360social online community. 

Related Articles

Chest

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

Project Details

Project Status
Completed
Project Lead
Kevin Winthrop, MD, PhD
Project Period
12 months
Organization
Oregon Health & Science University
Year Awarded
2015
State
Oregon
Project Type
Engagement Award Project
Project Budget
$224,233
Page Last Updated: 
November 12, 2019

Research & Results

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About Us

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Research & Results

  • Explore Our Portfolio
  • Research Fundamentals
  • Research Results Highlights
  • Putting Evidence to Work
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  • Evidence Synthesis
  • About Our Research

Engagement

  • The Value of Engagement
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Meetings & Events

January 21
Cycle 1 2021 Broad PFA Applicant Town Hall
February 2
PCORI 2021 and Beyond: Opportunities for Funding and Involvement in Patient-Centered Research
February 9
Board of Governors Meeting: February 9, 2021

PCORI

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Patient-Centered Outcomes
Research Institute

1828 L Street, NW, Suite 900
Washington, DC 20036
Phone: (202) 827-7700 | Fax: (202) 355-9558
[email protected]

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