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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info: https://youtu.be/811v7RLXP9M
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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

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MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

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BO Sufferers Podcasts

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TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
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Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Sunday, November 15, 2009

UK Trimethylaminuria testers can contact Nigel Manning to ask questions about their results



Many will know that Nigel Manning is responsible in the UK for setting up the only clinical trimethylaminuria testing unit in the UK, at Sheffield Children's Hospital.

Now Nigel Manning has kindly said we can post in this blog that anyone who has been tested by him for trimethylaminuria can contact him on his personal line or by email to ask about interpretation of their TMAU test results. This is very helpful, since often those testing have initiated the process themselves and had to initially convince a doctor to let them test. Nigel also says he is interested in clinical feedback from the testers (eg circumstances of odour, frequency, history etc)

Nigel can be contacted by those who have been tested by him by phone or email :
Nigel Manning
Principal Clinical Scientist
Dept. Clinical Chemistry
Sheffield Children's Hospital
Sheffield S10 2TH
UK
Phone: 0114 271 7479
email : Nigel.Manning@sch.nhs.uk
Nigel kindly done an interview with us earlier this year :
Interview with Nigel Manning, tester of clinical cases of trimethylaminuria in the UK

Note : It is probably ok for those wishing to test in the UK to contact Nigel Manning as well, for advice and information as to how to test

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