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The Bronchiectasis Care Center Network --33 centers!!
“As the prevalence of bronchiectasis and NTM lung disease grows, it is even more important for us to create this Care Center Network to improve access to high-quality, specialty care and resources patients need,” said Doreen Addrizzo-Harris, M.D., Chair of the CCN Steering Committee. “The CCN’s innovative, nationwide network will help us achieve our goals of improving care and quality of life for those with these conditions, as well as advancing toward a cure.”
The new Bronchiectasis and NTM Care Center sites are:
Cleveland Clinic Florida, Weston, Fla.
Columbia University Irving Medical Center, New York
Emory University Center for Bronchiectasis and Nontuberculous Mycobacterial Lung Disease Care, Atlanta
Georgetown University Medical Center/MedStar Georgetown University Hospital Center for Bronchiectasis and NTM Disease, Washington
Johns Hopkins Center for Nontuberculous Mycobacteria and Bronchiectasis, Baltimore
LSU Health New Orleans, New Orleans
Massachusetts General Hospital, Boston
Mayo Clinic, Rochester, Minn.
Medical University of South Carolina, Charleston, S.C.
National Jewish Health, Denver
Northwell Health Bronchiectasis and NTM Care Center at Long Island Jewish Medical Center, New Hyde Park, New York
Northwestern University, Chicago
NYU Langone Health Bronchiectasis and NTM Program, New York
Oregon Health & Science University, Portland, Ore.
Perelman School of Medicine at the University of Pennsylvania, Philadelphia
Stanford University, Stanford, Calif.
University of Alabama at Birmingham, Birmingham, Ala.
University of California, San Francisco
University of Kansas Medical Center, Kansas City, Kan.
University of Michigan Health, Ann Arbor, Mich.
University of Nebraska Medical Center, Omaha, Neb.
University of North Carolina Bronchiectasis/NTM Care and Research Center, Chapel Hill, N.C.
The University of Texas Health Science Center at Tyler, Tyler, Texas
The University of Texas Health Science Center at San Antonio, San Antonio
UVA Health, Charlottesville, Va.
Vanderbilt University Medical Center, Nashville, Tenn.
Washington University School of Medicine/Barnes-Jewish Hospital, St. Louis
The new Bronchiectasis and NTM Clinical
Associate Center sites are:
Cleveland Clinic Foundation, Cleveland
Norton Thoracic Institute at St. Joseph’s Hospital & Medical Center, Phoenix
NYC Health + Hospitals/Bellevue, New York
UC San Diego Health, San Diego
University of Miami Health System, Miami
University of Rochester Medical Center, Rochester, N.Y.
For more information about the #Bronchiectasis and #NTM Care Center Network, visit http://www.bronchandntm.org.
These are exciting times‼️
Better care is coming our way,
Linda Esposito
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Answers regarding the different types of care centers:
Both types of designated centers have experts that are well-versed in treating both bronchiectasis and NTM lung disease.
The main differences are:
Care Centers:
Typically see a larger cohort of patients
Have on-site access to advanced diagnostic resources
Well established clinical research programs
Clinical Associate Centers
Often the cohort numbers are lower than Care Centers (but not always)
Have access to advanced diagnostic resources through referral network
Are encouraged to develop or are still developing a clinical research program (yet will refer patients for clinical trials).
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4 ReactionsRegarding standards of care:
In the absence of treatment guidelines for bronchiectasis, the CCN Steering Committee is working with Center Directors to establish standards for centers. However, each center that was selected went through a comprehensive review. All CCN centers have met a set of requirements based on their designation to qualify. These requirements include the availability of specialty services, patient education, coordination of care, and continuing education of the director and staff (to name a few).
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6 Reactions@becleartoday Thank Linda. I may have misunderstood prior information, but it was my understanding that the Standards of Care were being developed in follow up to the US Guidelines (which of course are not yet published) and that these Standards of Care could be accessed by all patients, not just those at designated centers of excellence. It would seem that the centers of excellence are less in need of Standards of Care then the many local doctors many of us see, given the expertise in treating NTM at the centers of excellence. It is the patients of the local doctors who have little experience in treating NTM that in my opinion would likely benefit most from Standards of Care, Certainly it would give patients something to point to and say I need THIS. Did I misunderstand the purpose of the Standards of Care, are they not going to be a resource accessible by all patients but limited to internal standards establish exclusively for the centers of excellence? If you know ...
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1 ReactionYour point is well taken. I too thought there would be standards of care issued with the first round ofapproved centers. I don’t think they’re available yet. Once they are, I would like to believe that they will be made public and that we could then share them with our local doctor. I will try to confirm. The people who are overseeing the network at the Bronchiectasis and NTM Association are probably tired of seeing a Monday email from me 🙂 but here goes. Will get back to you. Linda
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1 ReactionMy smartest friend wrote this about standards of care for bronchiectasis. A query for the standard of care for bronchiectasis and NTM is also worthwhile.
BE standard of care from AI (BE-standard-of-care-from-AI.pdf)
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3 ReactionsThanks @becleartoday for all your hard work for all of us! You're amazing.
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1 ReactionI received a very prompt email back from those who are overseeing the centers. The Standards of Care are being finalized and will be made available to everyone once they are published. The bronchiectasis guidelines are being worked on separately.
Hope this is helpful,
Linda
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3 Reactions@scoop I think the list is helpful, however under the vaccination subheading perhaps adding Covid and RSV vaccines would be another suggestion.
Thanks for posting. Looking forward to the Bronchiectasis guidelines Standard of Care being published.
It would be helpful if the various Lung Associations could help get it in the hands of all family physicians.