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

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at UK Findacure conf 2020

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MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

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


Participation info : LINK English

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BO Sufferers Podcasts



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

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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NORD Member Organization
See RareConnect TMAU

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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

Monday, August 11, 2014

RE(ACT) TMAU project submitted by Dr John Christodoulou

Dr John Christodoulou TMAU project
Dr John Christodoulou
REA(CT) TMAU project has been submitted

We can inform you that a TMAU project has be submitted to the RE(ACT) rare disease crowdfunding platform :

by Dr John Christodoulou et al of Sydney Australia
It will now be reviewed by the RE(ACT) Scientific committee (expected time : 3-5 weeks)
NOTE : As it is exploratory it may not be approved by the committee

Project :
It has 2 parts :
1. is to use Ataluren to see if it improves nonsense mutation TMAU cases. This is a severe type of mutation and most sufferers probably do not have nonsense mutations (about 10% are estimated to have nonsense mutations).
TMAU project
2. To see if a microbe 'methylophilus methotropholus' could be used as a specific 'probiotic' for TMAU patients as it may neutralize trimethylamine in the gut. This should in theory helkp all TMAU sufferers.

Time and Cost :
The study would be expected to take 3 years, with 2 professionals being employed especially to conduct the study.
The cost would be around $AUS 473,000 plus RE(ACT) admin fees of 10% (current estimate)
The study would presumably take place in Australia

We will elaborate more over the days and weeks on the project, but basically all the info of the project is in the photo on the right, which is a copy of the document submitted.

To the right is Professor Christodoulou's career summary

Click to read project in full (pdf hosted on MEBO website)
Dr Christodoulou TMAU project  

Dr Christodoulou career summary 
(pdf hosted on MEBO website)

Other links :
Dr Christodoulou researcher listed on RE(ACT)


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