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.