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

Additional info:
MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

Full details :
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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
MEBO Research is a
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

Friday, August 5, 2016

Clinical Trials MEBO Metabolomic Study for Malodor

Canadian Volunteers Needed
for Metabolomics Malodor Pilot Study

On February 2016, MEBO received the approval from with Identifier, NCT02683876, so that we may to commence the Exploratory Study of Relationships Between Malodor and Urine Metabolomics, Sponsored by MEBO Research, Inc., with the University of Alberta, Canada as Collaborator. The aim of this study is the metabolomic profiling of urine samples for the identification of novel biomarkers, metabolic signatures associated with malodor conditions, and mechanisms in the diagnosis and management of malodor associated with metabolic inefficiencies. The investigators will perform state-of-the art metabolomics tests and bioinformatic data mining to explore whether conditions leading to malodor can be screened by metabolomic profiling of urine samples.

MEBO's Scientific Director, Irene Gabashvili, PhD. is representing MEBO as the registered U.S. Principal Investigator of this study, and she is collaborating with the registered Principal Investigator, David Wishart, PhD, and his staff of the Metabolomics Innovation Centre (TMIC) of the University of Alberta, in Edmonton, Canada.

All recruitment will be performed exclusively by MEBO.

Anyone interested in participating in this program can express interest by email Please provide your legal name, address, and email address where you will be contacted to be invited to participate in the study. At the present time, the pilot study is commencing involving participants who reside in Canada and suffer from a malodor condition, and based on results, may expand to include sufferers from other countries. If you qualify and are interested in being a participant in the pilot study and have not yet been contacted, please express interest to the email above.

Metabolic profiles will be identified using the metabolomics equipment located in the NMR, HPLC, and MS facilities of the Metabolomics Innovation Centre (TMIC).
In this study, metabolite profiling analysis will be carried out on urine samples of individuals with malodor conditions related to metabolism inefficiencies. Metabolic profiles will be identified using the metabolomics equipment located in the NMR, HPLC, and MS facilities of the Metabolomics Innovation Centre (TMIC). Multivariate statistical analyses will be used, as well as other approaches to mine complex data from heterogeneous sources.

For more information on this program, please see posts in this blog under tag, ‘Metabolomic Malodor Study’ and scroll down to see all posts.

In an effort to maintain the integrity of the study, the staff at TMIC will not have any of your personal information, and you may be disqualified from the study if you contact the lab directly and divulge personal information.
Confidentiality is of the utmost importance to MEBO and to this study. All information will remain confidential, and no one outside the MEBO staff in charge of this program will not have access to any of your personal information. In an effort to maintain the integrity of the study, the staff at TMIC will not have any of your personal information, and you may be disqualified from the study if you contact the lab directly and divulge personal information. All contact must be made through MEBO exclusively. Your cooperation in this matter would be greatly appreciated.

María de la Torre
Founder and Executive Director

A Public Charity
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Anonymous said...

Hi sorry this is off topic but is there any reason why the rareconnect website isn't working?

Aug 7, 2016, 4:32:00 PM
blogcontributor2 said...

Hi. It's probably being updated. Don't have any info but I wouldn't worry about it disappearing. They have good funding etc. Probably back tomorrow.

Aug 7, 2016, 5:05:00 PM
Anonymous said...

Oh that's good ��

Aug 7, 2016, 5:45:00 PM
Stephanie said...

Any update on trinzyme?

Aug 8, 2016, 11:21:00 PM
Maria de la Torre said...

The scientists are still pursuing significant funding (approximately $10 million US dollars) for the Clinical Trials phase. They are pursuing government and private grants. Once that has been achieved, I will post about it and the commencement of the Clinical Trials.

Aug 10, 2016, 2:00:00 PM
Stephanie said...

I'm glad to hear they are still pursuing grant money and that the project hasn't been dropped. Wish there was more we could do as a group...

Aug 11, 2016, 5:21:00 PM
Anonymous said...

Lets pray they get it :)

Aug 11, 2016, 9:07:00 PM
Anonymous said...

any reunion coming soon?

Aug 13, 2016, 10:43:00 PM
Anonymous said...

Have they found the grant and just working through legal procedures or still lookin for grants?

Aug 17, 2016, 6:23:00 PM
Maria de la Torre said...

We won't be informed until the process is finalized. There were some interested leads, but we don't know how it's going. Sorry.

Aug 18, 2016, 6:38:00 PM
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