The Bronchiectasis Research Registry, sponsored by the COPD foundation and governed by the Bronchiectasis Research Consortium, began enrolling patients in early 2008. The Registry is designed to collect health status information and track patients with non-CF bronchiectasis across the United States, starting with eleven Consortium medical research centers.
The type of information collected includes basic demographic information, past medical history related to the disease, respiratory symptoms, concomitant medications and other therapies, a history of images, cultures, and procedures, and information about possible specimen and images stored in repositories.
This comprehensive patient registry will facilitate research into the etiology of this condition. Patterns of characteristics of patients suffering from the condition can be identified for exploratory or hypothesis generating research from the Registry database. The Registry will also aid in the planning of therapeutic clinical trials through information about the numbers of patients available who satisfy certain inclusion/exclusion criteria as well as information on background rates of certain concomitant illnesses or use of medications, or other pertinent information.
Users of the Registry will be able to query the Registry database for interactive report generation and data queries to produce standard reports as well as customized data tabulations and listings.