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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

Saturday, January 30, 2016

Canadian Volunteers Needed for Metabolomics Malodor Pilot Study

Exploratory Study
Relationship Between Malodor and Urine Metabolomics

Canadian volunteers for a Metabolomic Malodor Study are needed at no cost to you. We would only need a urine sample from you when you believe you are having an odor flare up. Please contact me if interested in participating. This is a great opportunity for sufferers to see what metabolites appear in their urine.

MEBO is launching a new metabolomic profiling study with the Metabolomics Innovation Center of the University of Alberta, and test kits, instructions, and an explanation of the study will be sent to volunteers for pilot study to Canadian sufferers. We have cleared the waitlist that we had for this and there are now 25 research subjects. We can still take about 4 more Canadian volunteers, so please let me know if you are interested.

Testing will be carried out by Dr. David Wishart, PhD Yale, renowned scientist and head of the Metabolomics Innovation Centre of the University of Alberta and his staff. MEBO’s Scientific Director, Dr. Irene Gabashvili, PhD., will also assist with the analysis and interpretation of results. Dr. Gabashvili has been a MEBO director since the charity’s inception in the US on 2009. She is very familiar with the various conditions and needs of our community, including body odor, halitosis, and bromhidrosis, and has worked very closely with us in her development of Aurametrix.


As always, we guarantee that Dr. Wishart and our MEBO team will keep your information private and secure. If you decide to participate, please let me know if I may forward your address to Dr. Wishart for the lab to send you a kit with instructions within the next two weeks.
The main focus of Most online articles on metabolomic profiling are intended for professionals and difficult to understand for the lay person. So perhaps we can turn to Wikipedia to get an easier explanation on Metabolomics in layman terms.

If interested in participating, please email me your name, address, and email address to maria.delatorre@meboresearch.org .

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
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A EURORDIS and NORD Member Organization

5 comments:

Stephanie said...

Wow! Super interesting! Would love to participate although I'm in America.

Jan 30, 2016, 12:41:00 PM
Maria de la Torre said...

Depending on the results of this pilot study, it may include participants from the US.

Feb 8, 2016, 11:12:00 PM
Unknown said...

This is great. I sure hope the except from US soon would love to participate. Thanks for all you do for us Maria.

Feb 9, 2016, 9:46:00 PM
Unknown said...

This is great. I sure hope the except from US soon would love to participate. Thanks for all you do for us Maria.

Feb 9, 2016, 9:46:00 PM
Maria de la Torre said...

You're welcome. But a great deal of credit goes to those volunteers that have offered many hours, and will offer a great deal of their time without expecting compensation for their work.

It makes me very happy to see this program get off the ground. As I've stated over and over again through the years, most sufferers don't have TMAU, and we need to pursue research that helps us discover new diagnoses of breath/body odor conditions.

Feb 29, 2016, 3:06:00 PM
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