Bronchiectasis and NTM Care Center Network

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 (airway clearance, exercise, pulmonary rehabilitation, proper diet/nutrition, antibiotic therapy, and a range of inhaled medications) and 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

Considering the burden on patients and their families, combined with the economic impact, and increasing prevalence, the COPD Foundation has decided to establish a network of centers equipped with specialized health care providers and resources to support prompt and accurate diagnosis as well as high-quality care.

Bronchiectasis and NTM Care Centers


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.


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).

Bronchiectasis and NTM Care Centers Steering Commitee

Is your health care center interested in becoming a part of the Bronchiectasis and NTM Care Center Network? Email our team at CCN@BronchiectasisandNTM360.org.


Bronchiectasis and NTM Care Center Network Sponsors

Founding Sponsor

Insmed


References

  1. 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.
  2. Lavery K, O’Neill JS, Elborne J, et al. Self-management in bronchiectasis: the patients' perspective. European Respiratory Journal. 2007 29: 541-547
  3. 3. Mehta M, Marras TK. Impaired health-related quality of life in pulmonary nontuberculous mycobacterial disease. Respir Med. 2011;105(11):1718-1725.
  4. Loebinger MR, Wells AU, Hansell DM, Chinyanganya N, Devaraj S, Meister M, Wilson
  5. R. Mortality in bronchiectasis: a long-term study assessing the factors influencing survival. Eur Respir J. 2009 Oct;34(4):843-9.
  6. 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
  7. Chalmers J, Aliberti S, Blasi F. Management of bronchiectasis in adults. European Respiratory Journal. 2015 45: 1446-1462.
  8. Loebinger MR, Wells AU, Hansell DM, Chinyanganya N, Devaraj S, Meister M, Wilson
  9. 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.