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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
MEBO Karen
at UK Findacure conf 2020

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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

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

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

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
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org TMAU

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Blog Archive

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, March 7, 2021

(USA) TMAU ... ICD-10-CM Diagnosis Code E72.52

Trimethylaminuria Diagnosis Code for USA Health System :
ICD-10-CM Diagnosis Code : E72.52

It seems since 2015 TMAU has been given an 'official disease code' by the World Health Organisation, and so has an official code in the USA Healthcare System : E72.52


This is news to the blog, and so it's unclear what impact this has in practice.
Does it mean the TMAU test is billable to the Drs ?? (Denver test lab says no insurance).

Only time will tell.

Note : Info may be incorrect as it's deemed too important to wait for clarification etc. This is an evolving story. 

Thanks to this lady for mentioning this in her article for Rare Disease Day 2021
it’s important to know that TMAU does have an ICD-10 code! In 2015, thanks to tireless advocates, the World Health Organization officially recognized trimethylaminuria as a disease. E72.52 is the billable ICD-10-CM code for trimethylaminuria.

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A EURORDIS and NORD Member Organization

2 comments:

Unknown said...

I got tested for tmuh and came out nagative why do I smell like poop then? I've been smelling for almost 3 yrs now.

Mar 8, 2021, 9:55:00 PM
Anonymous said...

muy buena noticia es importante para todos nosotros que paresemos de tmau

Mar 9, 2021, 2:47:00 AM
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