Bronchiectasis Research Roadmap Draft For Review

Posted on November 22, 2016   |   
Author: Delia   |   
7 Comments   |   
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As we describe in previous blog posts, the Bronchiectasis research roadmap is in the final stages of development. Earlier this year, Dr. Kevin Winthrop and his team at Oregon Health and Science University (OHSU) began working on this Patient-Centered Outcomes Research Institute (PCORI)-funded project in partnership with NTM Info & Research and the COPD Foundation. This project is designed to identify priorities for bronchiectasis research and create a roadmap for this research. A draft of this roadmap document can be accessed here: Bronchiectasis Roadmap draft v3 28Nov2016.pdf (722.25 KB)

If you are interested in providing feedback, please send any edits/feedback to: info@bronchiectasisandntminitiative.org no later than Friday, December 9, 2016. A final version of this research roadmap document will be posted on BronchandNTM360social once available. Thanks in advance for your feedback, and many thanks to everyone who completed the survey for this project—it would not have been possible without your input!

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  • Hi all, thanks for the comments thus far! We have updated the document above and extended the deadline to Friday, December 9th. We look forward to receiving more feedback. Thanks again!
    Reply
  • I reviewed the roadmap and would make two suggestions.

    1. The new booklet will be titled "The 1s, 2s and 3s of Bronchiectais" The target audience is for the newly diagnosed. This is modeled after The 1s, 2s and 3s of COPD. It will be available in printed booklet form and is dual sided, English and Spanish. Also available for e-download in English and Spanish. These languages will not be combined like the printed booklet.

    2. I think there is an error with a statement in the section on Introduction - Background paragraph 2. The statement says this: "Bronchiectasis is characterized by dilated and damaged bronchi and is distinct from obstructive
    lung disease (COPD)." This seams misleading to me. The way I interpret this is that bronchiectasis is not a form of onbstructive lung disease (which is false) and not a form of COPD. I think the statement should state something like "... and is a distinct form of obstructive lung disease (COPD). Even the terms OLD can be confusing. I prefer to just say COPD.

    Furthermore, the COPDF definition of COPD is written as this: "COPD, or Chronic Obstructive Pulmonary Disease, is an umbrella term used to describe progressive lung diseases including emphysema, chronic bronchitis, refractory (non-reversible) asthma, and some forms of bronchiectasis. This disease is characterized by increasing breathlessness."

    This statement is misleading and even if corrected should be expanded for consistency with the COPDF definition of COPD. Not all forms of Bronchiectasis qualify as COPD, I agree. Just like not all forms of chronic bronchitis or emphysema are classified as COPD. However, for more advanced forms that cause permanent irreversible airflow obstruction, these are a form of COPD and should be recognized as such. The COPDF has worked hard to change the common thought that all COPD is treated the same. It is important to recognize that subtypes of COPD need special attention and treatment options. This is the case for alpha-1 related COPD, oxygen dependent COPD, chronic bronchitis, emphysema and bronchiectasis. Each of these subtypes have a few very specific treatment options that would not be used in treatment for the other forms of COPD. Therefore, it is paramount to make the distinction that some forms of bronchiectasis results in permanent non-reversible airflow obstruction and is a form of COPD which requires more research and specialized treatment options for the betterment of the individual patient and their specific type of lung disease.
    Reply
    • Scott, thank you so much for your feedback and your thorough look into this Roadmap. All of your comments will add to this most important endeavor!
      Reply
    • Thanks so much for your feedback, Scott--very much appreciated!
      Reply
  • Hi Scott,
    Thank-you for your comments. We will correct #1 and work with our clinical stakeholders to clarify the issue you bring up in #2. I agree it is very important to talk about subtypes of bronchiectasis, and we plan to add additional information about considering overlapping COPD and asthma to the introduction and Priority 5 (underlying conditions).
    Emily
    Reply
  • Hi all, just a quick reminder that today's the last day to submit feedback on this research roadmap. Please send any feedback via email to info@bronchiectasisandntminitiative.org. Thanks!
    Reply

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