The Bronchiectasis Care Center Network --more centers added

There are an additional 25 centers that have been approved, but are still being processed,. Hopefully it will be made public before the North American Bronchiectasis and NTM conference that will be held in December.

Warm regards and enjoy the weekend, Linda Esposito

Thanks Linda! That's such good news. It's really concerning that people are posting on this site and have been diagnosed with an NTM and haven't been given any info about nebulizing and airway clearance.

You have a nice weekend as well:), Kathy

At the fundraising luncheon I attended with Dr. Daley, he emphasized that the new care centers will not be modeled after National Jewish Health. That level of comprehensive support such as respiratory therapy and nutrition services would be far too costly to sustain. While many of us would love to assume those services will be automatically included, it may not be realistic.

From what I understand, although I have not seen official documentation, the main criteria may include a strong pulmonology program, collaboration with infectious disease specialists, following standard of care, a certain volume of patients, and active involvement in research.

This is still an important step forward. Even if the care centers do not initially provide the full range of supportive services, I am hopeful that over time patients will gain access to these resources either onsite or through remote options.

For now, I think the key is managing expectations while still celebrating progress. Most importantly, we can hope that every patient who walks through these centers receives excellent care.

Linda Esposito

Well said, Linda! If pulmonary doctors simply considered bronchiectasis in the differential diagnosis, it could spare patients like me a decade of uncertainty.

Whether we get the additional support will vary by center. Clearly, if a center is affiliated with a hospital, then there’s more likely to be access to RTs and others.

What really hit home for me with what Dr. Daily mentioned was the plan to have all the Centers of Excellence involved with reporting medical statistics etc. etc. to Dr. Daily and NJH in order to advance further: and possibly more quickly, I guess; positive changes, findings and results to help in the cause and treatments for patients.
Is that what you gathered Linda??
Barbara

Hi Barbara, Yes, so exciting! Dr. Daley is now serving as Head of Research for the Bronchiectasis Care Center Network, a role that’s independent of National Jewish Health. What I hadn’t fully appreciated before—but should have—is how these networks create a built-in system for research recruitment. That means clinical trials will be able to shorten recruitment timelines significantly. Truly brilliant!

Enjoy the day,
Linda Esposito

Just a curiosity question....are these centers creating their own registry? Or are they using existing registries, such as https://www.copdfoundation.org ? There seem to be a number of registries like https://ntminfo.org/ntm-registry/ and others on other continents. I guess there's money in it but I wonder what the advantages are of having multiple registries? I guess by country or continent makes sense. Maybe it's similar to having more than one net to catch fish.

That’s a good good question! From what I understand, I think they’re trying to figure that piece out as well.

I wanted to share I just read a post confirming the Bronchiectasis and NTM network has added 25 new care centers. This should be super helpful as there may now be a location more convenient for diagnosis and treatment.

The new Bronchiectasis and NTM Care Center sites are:

Baylor College of Medicine, Houston
Jane and Leonard Korman Respiratory Institute, Jefferson Health, Philadelphia
Montefiore Medical Center, Bronx, N.Y.
UConn Health, Farmington, Conn.
University of Iowa Health Care, Iowa City, Iowa
University of Texas Southwestern Medical Center, Dallas
University of Vermont Medical Center, Burlington, Vt.
Yale University, New Haven, Conn.
The new Bronchiectasis and NTM Clinical Associate Center sites are:

Baylor University Medical Center, Dallas
Beth Israel Deaconess Medical Center, Boston
Intermountain Medical Center Schmidt Chest Clinic, Murray, Utah
Keck Medicine of USC, Los Angeles
Mayo Clinic Arizona, Phoenix
Mayo Clinic Florida, Jacksonville, Fla.
Providence Medical Group, Spokane, Wash.
Pulmonary Sleep Center of the Valley, Weslaco, Texas
Santa Barbara Cottage Hospital, Santa Barbara, Calif.
Temple Lung Center, Philadelphia
UC Davis Medical Center, Sacramento, Calif.
UCI Health, Orange, Calif.
University of Cincinnati, UC Medical Center, Cincinnati
University of South Florida, Tampa, Fla.
VCU Health, Richmond, Va.
Westchester Medical Center, Valhalla, N.Y.
Zuckerberg San Francisco General Hospital, San Francisco
https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/General-Information