Bronchiectasis and NTM Care Center Network
Bronchiectasis and nontuberculous mycobacterial (NTM) lung disease impacts hundreds of thousands of individuals in the U.S.
These conditions have significant impact on patients and their families – from disease management and symptom burden to the economic impact.
The Bronchiectasis and NTM Care Center Network was established to help facilitate access to specialized care. This nation-wide network of centers will strive to provide prompt and accurate diagnosis and outstanding medical care, resources and education to those impacted by these chronic lung diseases.
Mission:
To establish a network of centers across the country, with the goal of reducing the time to diagnosis and supporting high-quality bronchiectasis and nontuberculous mycobacterial (NTM) lung disease care.
Vision:
Every patient receives a prompt, accurate diagnosis; the highest quality, patient-centered care; and the resources, education, and support necessary to properly manage their disease.
Our Goals:
- Accelerate time to diagnosis and deliver individualized, comprehensive, high-quality care.
- Educate health care teams about bronchiectasis and NTM lung disease and the care required to achieve and maintain the best possible health outcomes.
- Support research and clinical trials and the development of real-world evidence.
- Deliver patient-centered education to improve long-term disease management.
- Increase disease awareness as well as patient education and engagement.
The Care Center Network Model
Clinics accepted to participate in the Bronchiectasis and NTM Care Center Network will receive one of the following designations, depending on their institutional resources and infrastructure:
- Bronchiectasis and NTM Care Center
- Bronchiectasis and NTM Clinical Associate Center
The designation criteria and requirements for each type of center has been established by the Bronchiectasis and NTM Care Center Network Steering Committee.
Background
Individuals with bronchiectasis and NTM often struggle with symptoms such as chronic cough, mucus production, dyspnea, hemoptysis, fatigue, weight loss and repeated lung infections. These patients are known to have reduced quality of life and increased anxiety and depression.1,2 Over time, bronchiectasis and NTM can lead to impaired lung function and long-term disability and have been associated with increased mortality.3,4
Disease management for both conditions involves several components including, but not limited to: airway clearance, exercise, pulmonary rehabilitation, proper diet/nutrition, antibiotic therapy and a range of inhaled medications. The disease management process can often be lengthy, taking up to a few hours daily.3 The goals for treatment include reducing symptom burden, eliminating and preventing infections and exacerbations, improving (or maintaining) quality of life and maintaining lung function.5
In addition to the impact on patients and their families, research shows that the economic impact of bronchiectasis is significant, especially among those with more frequent exacerbations,6,7 and that incidence for both conditions is on the rise.8,9
The Care Center Network has been established to help address the burden on patients and their families and to facilitate quality care options as the number of individuals diagnosed with NTM lung disease and bronchiectasis increases.
The Bronchiectasis and NTM Care Center Network Steering Committee
We have established a Steering Committee (see below) comprised of leading experts in the field who bring a diverse set of skills, experience, and expertise. The Steering Committee will provide oversight of the CCN site designation criteria and requirements, ensuring that they are in alignment with most up-to-date standards of care and treatment guidelines (as available in the future).
Contact Us to Learn More
Bronchiectasis and NTM Care Center Network Sponsors
Founding Sponsor
Friends of the Care Center Network
References
- Strollo SE, Adjemian J, Adjemian MK, Prevots DR. The Burden of Pulmonary Nontuberculous Mycobacterial Disease in the United States. Ann Am Thorac Soc. 2015 Oct;12(10):1458-64.
- Lavery K, O’Neill JS, Elborne J, et al. Self-management in bronchiectasis: the patients' perspective. European Respiratory Journal. 2007 29: 541-547
- 3. Mehta M, Marras TK. Impaired health-related quality of life in pulmonary nontuberculous mycobacterial disease. Respir Med. 2011;105(11):1718-1725.
- Loebinger MR, Wells AU, Hansell DM, Chinyanganya N, Devaraj S, Meister M, Wilson
- R. Mortality in bronchiectasis: a long-term study assessing the factors influencing survival. Eur Respir J. 2009 Oct;34(4):843-9.
- Diel R, Lipman M, Hoefsloot W. High mortality in patients with Mycobacterium avium complex lung disease: a systematic review. BMC Infect Dis. 2018;18(1):206
- Chalmers J, Aliberti S, Blasi F. Management of bronchiectasis in adults. European Respiratory Journal. 2015 45: 1446-1462.
- Loebinger MR, Wells AU, Hansell DM, Chinyanganya N, Devaraj S, Meister M, Wilson
- Adjemian J, Olivier K, Seitz AE, Holland SM, Prevot DR. Prevalence of nontuberculous mycobacterial lung disease in U.S. Medicare beneficiaries. Am J Respir Crit Care Med. 2012. 2012 Apr 15;185(8):881-6.