Bronchiectasis and NTM Research Registry
Bronchiectasis is lung disease characterized by the permanent widening of the small airways, causing collection of mucus and recurring infections of the airways. Symptoms of Bronchiectasis include frequent coughing, breathlessness, chest pain, and fever. To learn more about Bronchiectasis, visit the What is Bronchiectasis? section.
Individuals with Bronchiectasis often also have Nontuberculosis Mycobacteria (NTM) lung disease. NTM is naturally occurring environmental bacteria that causes lung disease. Symptoms of NTM lung disease include cough, shortness of breath, wheezing, and chest pain. For more information on NTM, visit the What is NTM? section.
The Bronchiectasis and NTM Research Registry is a consolidated database of non-Cystic Fibrosis (non-CF) Bronchiectasis and/or NTM patients from multiple clinical institutions across the United States. The goal of the Registry is to support collaborative research and assist in the planning of multi-center clinical trials for the treatment of non-CF Bronchiectasis and/or NTM lung disease.
In 2007, in response to requests from the key opinion leaders, the COPD Foundation, in collaboration with the National Heart, Lung and Blood Institute, convened a workshop to discuss the unmet need to support collaborative research and assist in the planning of multi-center clinical trials for the treatment of non-CF Bronchiectasis. The consensus recommendation from the workshop was that it was necessary to establish a Bronchiectasis Research Consortium in an effort to address the critical, but unmet needs of this community. The first priority of the Consortium was to create a Bronchiectasis Research Registry to serve as a platform to collect data on and better understand non-CF Bronchiectasis.
Given the link between Bronchiectasis and NTM lung disease, the COPD Foundation partnered with NTM Info & Research in 2011 to add an NTM lung disease component to the Registry. Click here to access a PDF file with highlights of the Bronchiectasis and NTM Research Registry.
The COPD Foundation is grateful to the Richard H. Scarborough Bronchiectasis Research Fund for providing funding to establish the Registry. To read about the Richard H. Scarborough Bronchiectasis Research Fund, please click here.