The Bronchiectasis and NTM Research Registry is a longitudinal, clinician-reported database of medical data from thousands of individuals with non-CF bronchiectasis and/or NTM lung disease. Data is collected from Registry participants’ medical records and in-person clinic visits using standardized data collection forms.
The data collection forms capture extensive demographic and clinical data, including medical histories, co-existing diagnoses, microbiology, treatment and therapies, and imaging. Data are abstracted and entered in a centralized database at baseline, defined as the two-year period prior to enrollment, and annually thereafter. The centralized database is managed by the Association, offering the flexibility for ancillary studies and the addition of data collection points beyond the current case report forms.