New initiative aims to tackle bronchiectasis underdiagnosis in America

The American Thoracic Society (ATS) today announced a major quality improvement initiative aimed at tackling the persistent and widespread underdiagnosis of bronchiectasis in the United States. As the world's leading medical society dedicated to accelerating the advancement of global respiratory health, the ATS is uniquely positioned to lead this hypothesis-driven initiative. The intiative is made possible through an independent research grant from Insmed Incorporated, a people-first global biopharmaceutical company striving to deliver first- and best-in-class therapies to transform the lives of patients facing serious diseases. The ATS will solely design, lead, and execute all aspects of the initiative, drawing upon the expertise of multidisciplinary membership in respiratory medicine.

Bronchiectasis – a chronic, progressive lung disease characterized by permanent widening of the airways – affects a significant and likely underestimated number of Americans. Despite its serious impact on patients' quality of life, it is hypothesized that bronchiectasis is frequently underdiagnosed, as its symptoms often overlap with other respiratory diseases like asthma or chronic obstructive pulmonary disease (COPD), delaying appropriate treatment and worsening outcomes. This quality improvement study seeks to investigate the true scope of the problem and drive meaningful, lasting change in how the disease is identified and managed.

A multi-site study with national reach

The ATS, working with seven academic medical systems across the country, will conduct a large-scale electronic health record (EHR) inquiry to identify whether patients with a diagnosis of COPD or asthma also have bronchiectasis or whether they were misdiagnosed altogether and have bronchiectasis as the underlying condition. The study will examine diagnostic imaging practices, potential patterns of misdiagnosis, and potential disparities in access to specialty care – with a particular focus on underserved and diverse communities.

 In parallel, this initiative will establish prospective programs with an aim to improve earlier diagnosis and guideline-directed care, and will evaluate outcomes across this combined, representative patient population.

Bronchiectasis is a condition that has long been hiding in plain sight. Too many patients are living with undiagnosed or misdiagnosed bronchiectasis, missing out on appropriate care. This initiative represents a critical step toward closing that gap – using the power of real-world data, quality improvement and implementation science, and the ATS's national network to drive better outcomes for patients across the country."

Raed Dweik, MD, MBA, ATSF, ATS President 

From data to action: A roadmap for change

The initiative is structured around four key goals to be achieved over a 36-month period:

• The initiative will begin by identifying potential misdiagnosis patterns, using structured EHR data and, at select sites, AI-assisted tools, to determine how many patients currently diagnosed with COPD or asthma may actually have bronchiectasis.
• Alongside this, the initiative will work to understand the exacerbation burden by characterizing patients with frequent respiratory exacerbations and assessing whether bronchiectasis, chronic infections, or underlying etiologies have been appropriately evaluated.
• Building on these insights, the initiative will pilot scalable solutions by co-designing and testing practical interventions –including EHR-based prompts, point-of-care clinical tools, and educational outreach such as continuing medical education (CME) modules.
• Finally, findings will be broadly disseminated to clinicians and health systems nationwide through a variety of educational resources and national platforms.

"At Insmed, we are deeply committed to patients with serious lung diseases, and we know that the journey to an accurate diagnosis can be long and difficult for those living with bronchiectasis," said Insmed's Chief Medical Officer Martina Flammer, MD, MBA ,. "We are proud to support the ATS in this important work through an independent research grant. By helping to illuminate potential diagnostic gaps, we hope this important initiative led by the ATS will contribute to a future where every patient with bronchiectasis gets the timely, accurate diagnosis they deserve."