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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

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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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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

Thursday, April 14, 2011

DNA testing at 23andme.com

We have mentioned before that 23andme.com genetic testing service is an inexpensive way of getting your genome tested, including for the FMO3 enzyme associated with genetic trimethylaminuria (usually around $199). Sometimes they do special offers where it is even cheaper. Currently they are offering their DNA test for $99 plus shipping, as long as a $9 a month subscription to their online service is also taken for a year (check details).

23andme.com is owned by the wife of one of the Google founders. They use SNP chips for testing.

Many genetic disorders are listed and easy to find out if you are a carrier or have the disorder. However, trimethylaminuria is not one of those listed, and you have to delve into the 'raw data' and interpret it, which to most non-experts would be nigh impossible. Currently there are 56 SNPs for FMO3 listed in the raw data, and we hope to get an expert to help us compile a table so that people can generally interpret their FMO3 DNA result using 23andme.com.

We will keep you updated and post a table here when possible.

Those wishing not to know their risk to other diseases such as cancers or Alzheimer disease should not tick the box shown when they first go to their results page.

The sample is taken via a saliva sample sent by mail. Some States do not allow consumer genetic testing (NY State ?). The only way around this is to get the kit sent to an address in another State.

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