Global BE & NTM Initiative

The 7th World Bronchiectasis Conference featured a pivotal discussion among leaders of bronchiectasis registries from the US, Europe, China, India, South Korea, and Australia. These registries, extensive databases with critical patient and disease information and their complementary biobanks which store biological samples, have amassed substantial data over time. Data from the European registry, EMBARC, has already been used in over 40 publications!


Recognizing the potential of combined efforts, moderator Dr. Doreen Addrizzo-Harris proposed a collaborative research approach across these registries. Moderator Dr. James Chalmers echoed this sentiment, suggesting a joint publication discussion at the next conference as a tangible goal. 


Audience members expressed interest in accessing registry data for their own research, a request met with encouragement from Dr. Chalmers. He added that with tens of thousands of patients contributing their data, the medical community now bears the responsibility of using this resource to  improve patient care. 


The emergence of the Bronchiectasis Care Center Network (CCN) in the United States, with a potential of 350 centers, will be a significant development in data collection. 


Dr PJ McShane noted that expanding beyond the current institutions and their data banks to include public hospitals will provide a more comprehensive understanding of bronchiectasis and NTM and its impact on minority populations.


 Access to care has been a lifelong concern of mine. From my public health background and current engagement with people all over the world who have BE and NTM, I know there are many who do not get the care they need to fight these diseases. 


If you have the opportunity, please join me in participating in registries and data banks. It’s very satisfying to be involved in this global effort—and hopefully the discovery of a cure.🫁✨


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