Participating in BE Surveys, Interviews and Clinical Trials

A recent bronchiectasis conference revealed a surprising statistic: only 50% of the audience expressed willingness to participate in clinical trials!!!

While some may be hesitant to take medications without more detailed information, there are other ways to contribute to research.

Options for Participation:

*Surveys and interviews: Participating in surveys helps researchers better understand patient needs and satisfy FDA requirements for patient participation. Many trials cannot move forward without completed surveys from us.


*Patient Advocacy Groups: Registries like EMBARC and the COPD Foundation’s Bronchiectasis Research Registry gather valuable data and researchers use it for their studies.


*Biobanks: My experience at NYU Langone highlights the diverse nature of research participation. I agreed to participate in Dr. Leo Segal’s biobank  (sputum, blood, potentially stool) to understand how factors like bacteria, viruses, fungi and gut health influence disease progression.


This research could pave the way for personalized treatments based on individual microbiomes.


Let’s educate ourselves about research opportunities and become active participants. Together, we can make progress in developing new treatments for bronchiectasis.


Had the researchers asked the audience what percentage of people would like new treatments, I bet the answer would’ve been 100%.


To make new treatments a reality we need to step up!!!✨✨✨​

#StepUp #NewTreatments #ClinicalTrials #ClinicalTrialSurveys #ClinicalTrialInterviews #MakeADifference #MakeADifferenceToday #Bronchiectasis #a1at #PrimaryCiliaryDyskinesia  #phagetherapy #maclung #maclungdisease