Bronchiectasis Research Registry

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.

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.

To donate to the Richard H. Scarborough Bronchiectasis Research Fund, please click here.

BRONCHIECTASIS RESEARCH CONSORTIUM SITE LISTINGS

*Click the pinwheel on the map to view more information about the site listing.
*Some states have more than 1 location (i.e. New York). Zoom in to view additional listings.


FOR PATIENTS

How can I join the Bronchiectasis and NTM Research Registry?plus

Individuals interested in enrolling in the Bronchiectasis and NTM Research Registry must be aged 18 years or older and have a diagnosis of non-CF bronchiectasis, NTM lung disease, or both. Individuals who meet the criteria and are interested in enrolling must be enrolled in the Bronchiectasis and NTM Research Registry by visiting a physician who takes part in the Bronchiectasis Research Consortium (BRC). The BRC consists of 13 academic medical centers across the U.S. (see map above pinpointing all BRC sites) who are actively recruiting patients for the Bronchiectasis and NTM Research Registry. To obtain more information (such as contact information) for a specific BRC site, click on its corresponding pinwheel.

What if there is no Bronchiectasis Research Consortium site near me?plus

The COPD Foundation is exploring the possibility of expanding the Bronchiectasis Research Consortium to include new sites/locations. If you prefer not to (or are unable to) travel, but would still like to participate in research, you may be interested in the COPD Patient-Powered Research Network (COPD PPRN). See below for more information regarding the COPD PPRN.

Are the COPD Patient-Powered Research Network (COPD PPRN) and the Bronchiectasis and NTM Research Registry the same thing?plus

No. The COPD Patient-Powered Research Network (COPD PPRN) is a participant-enlisted database in which individuals with COPD, or individuals at risk of developing COPD, provide their health information and the impact the disease has on their lives. Individuals who enroll in the COPD PPRN also consent to be contacted in the future for participation in research studies and/or clinical trials. To learn more about the COPD PPRN, please click here. The Bronchiectasis and NTM Research Registry contains medical and scientific data that is useful to physicians who are researching specifically Bronchiectasis and/or Nontuberculosis Mycobacteria lung disease (NTM).

Can I join both the COPD Patient-Powered Research Network (COPD PPRN) and The Bronchiectasis Research Registry?plus

Yes, individuals who meet the criteria may enroll in both the Bronchiectasis and NTM Research Registry and the COPD PPRN. Each Registry has specific criteria for enrollment. If you are interested in enrolling in the Bronchiectasis and NTM Research Registry, please see section above regarding how to join. Should you have any questions about the Bronchiectasis and NTM Research Registry, contact Delia Prieto at 1-866-731-2673 ext. 272 or dprieto@copdfoundation.org. If you are interested in learning more about the COPD PPRN or enrolling in the COPD PPRN, please click here.

FOR HEALTHCARE PROVIDERS

Data Collected in the Bronchiectasis and NTM Research Registryplus

The type of information collected in the Registry includes basic demographic information, past medical history related to the disease(s), respiratory symptoms, concomitant medications and other therapies, a history of images, cultures, and procedures, and information about possible specimen and images stored in repositories. To see the complete set of Bronchiectasis and NTM Research Registry data collection forms, click here.

Use of the Bronchiectasis and NTM Research Registryplus

The Bronchiectasis and NTM Research Registry can be used for two purposes:

  1. to analyze the data collected in the database, and/or
  2. to recruit patients for enrollment in research studies and/or clinical trials.

Researchers will go through an application process, which involves Advisory Committee review and approval for the use of the Registry, as well as a regulatory process, which involves a contract and proof of IRB or FDA approval.

If you are interested in using the Registry, please download the Application and Data Dictionary. Please submit your completed Application/Data Dictionary to Delia Prieto via email: dprieto@copdfoundation.org.

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