Please complete this survey if you have NTM (MAC) lung disease by 7/28

Posted by becleartoday @becleartoday, Jul 24 8:04am

A takeaway from attending the World Bronchiectasis Conference is that researchers, industry, and clinicians want our input. They want us to be active on Team Bronchiectasis & NTM!!!

Participation in this survey is an opportunity to show them we are willing to get involved. We want a seat at the table.

If you have NTM lung disease (such as MAC), please complete this survey (it took me less than 10 minutes). Also, if you have a spouse, partner or caretaker, the researchers want their input, too.

Let’s show up for the incredible Dr. Kevin Winthrop from Oregon Health and Science University. He does lots of research to support us (including an ongoing nebulizing study).

Now let’s help Dr. Winthrop and his team take this research over the finish line. They need 60 more completed surveys by July 26th.

Let’s show them how we show up.

Thank you,
Linda Esposito

English – https://delphimanager.liv.ac.uk/MACCOR/Home/Register
**Edited July 25, 2023 – Added link to survey**

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

lolaf | @lolaf | Jul 24 8:07pm

Hi Linda, First, thanks so much for all of your helpful posts. Second, I wasn’t able to find the survey either by the “survey link” posted or by searching OHSU and Dr Winthrop’s information page. Please post the link again, Thank-you, Judy

becleartoday | @becleartoday | Jul 24 8:36pm

I guess they don’t allow active links. If you copy and paste the URL below, you should be able to get to it. Thank you so much for all your efforts!
https://delphimanager.liv.ac.uk/MACCOR/Delphi

rosnat | @rosnat | Jul 24 8:59pm

I dont see any survey link

becleartoday | @becleartoday | Jul 25 5:02am

In reply to @rosnat "I dont see any survey link" + (show)

https://delphimanager.liv.ac.uk/MACCOR/Delphi

becleartoday | @becleartoday | Jul 25 5:16am

Unfortunately, there isn't an option to edit my initial comment. We have until July 28th and the link is:
https://delphimanager.liv.ac.uk/MACCOR/
Then scroll to the bottom of the study details to register. Thank you for contributing to research on NTM! These are exciting times!!

John, Volunteer Mentor | @johnbishop | Jul 25 7:28am

In reply to @becleartoday "Unfortunately, there isn't an option to edit my initial comment. We have until July 28th and..." + (show)

@becleartoday, the link you provided has a "Register" link at the bottom of the form which takes you to the survey form here: https://delphimanager.liv.ac.uk/MACCOR/Home/Register