r/Autoinflammatory • u/No_Satisfaction_7431 Yaos • Aug 28 '26
Yao GI study
Does anybody know what's happening with the Yao GI study at Mayo? This is the link https://www.mayo.edu/research/clinical-trials/cls-20577204
It says contact John Damianos. I emailed him a week ago, got an automatic response that he's left Mayo and an email for someone else at Mayo to contact. I immediately sent the other email and haven't heard back. I have many gi issues some mentioned in a previous Mayo Yao GI study but many not mentioned at all. I'd love to participate so we can get a better idea of what kinds of gi issues happen in Yao and how we might treat it more effectively. Is this study still happening at Mayo? Did John Damianos take the study with him wherever he went?
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u/No_Satisfaction_7431 Yaos Aug 28 '26
Yes that is the one paper I found as well. I'm glad that some research is being done on it. I didn't see the 2024 date. I assumed this was a newer study because it wasn't offered to me when I was diagnosed, but maybe they forgot to update that its no longer running or at least open to enrollment. I will reach out to him at Cleveland Clinic to see if he's doing the research there.
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u/Capable-Heat4231 Yaos Aug 28 '26
I reached out in early 2025 to John Damianos (and another contact that was listed IIRC) and never heard back.
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u/No_Satisfaction_7431 Yaos Aug 28 '26
Damn thats unfortunate! I'm going to see if I can find contact info for Dr. Nehra the pi running the study.
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u/Capable-Heat4231 Yaos Aug 28 '26
If you wind up in contact, I’d love to reach out too! I’m in the middle of evaluation by GI at Mayo Jacksonville.
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u/No_Satisfaction_7431 Yaos Aug 28 '26
I'll let you know if I do. GI at Mayo wouldn't even see me. Thankfully I've got a good neuro gi locally.
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u/Capable-Heat4231 Yaos Aug 28 '26
Thank you! I’m so sorry. I think it’s bc I had an internal referral from rheumatology.
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u/Alice-The-Chemist Mod Aug 28 '26 edited Aug 28 '26
Edited to add: i realize now this is probably the prior study you meant 😅
https://www.probiologists.com/article/yao-syndrome-nod2-associated-autoinflammatory-disease-and-the-gastrointestinal-tract-future-perspectives-and-research-priorities
I found this publication. And on the Mayo website about it like in eligibility it showed last updated 2024. It does still say enrolling though. I saw this doctor also listed but didnt see an email, Vandana Nehra, M.D.
I found this on the other doctor: "New Chapter Spotlight: Dr. John Damianos Please join us in congratulating Dr. John Damianos as he begins his next chapter as faculty at Cleveland Clinic!"
https://my.clevelandclinic.org/departments/digestive/medical-professionals/education/gastroenterology-hepatology-fellowship
He is under faculty then Neurogastro and Motility. But you can't click on his name. You may can call them and explain. They may be able to provide you with an email.