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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

Scroll down and select country
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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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, December 4, 2010

MEBO and Eliapharma TMAU Testing and future research goals

Update 5

Each person who tests through MEBO/Eliapharma can feel the pride that comes with being a part of a movement that proactively seeks to find answers and a cure for all types of body odor conditions.
IT is in keeping with MEBO Research's Mission, "to support the scientific and medical communities to perform formal professional research into body odor and halitosis conditions,” that MEBO has chosen Eliapharma Services Inc., to perform phenotype TMAU test (urine test) for our community. As noted in their website, this lab has been involved in Analytical, Bio-analytical, medicinal chemistry, and preclinical and clinical services, for Biotechs, University Research Centers, Institutes, Pharmaceutical Companies, Generic Companies and Hospitals. Consequently, Eliapharma is now in a good position to apply for (and hopefully obtain) research grants from the Canadian National Institutes of Health and/or some of the pharmaceutical companies they have worked with in the past. This process will take time, as much preliminary work would be needed, such as gathering data through testing and establishing a database, initially of TMAU test results and eventually of the various types of body odor conditions, and a great deal of documentation would have to be drafted to support research funding.


Each person who tests through MEBO/Eliapharma can feel the pride that comes with being a part of a movement that proactively seeks to find answers and a cure for all types of body odor conditions. While MEBO and Eliapharma are totally committed to protect the privacy of each person by assigning each person an account number so as never to divulge personal information such as name, address, and telephone or email contact to anyone without prior written authorization if ever needed, we hereby disclose that all test results and answers to voluntary surveys will become part of the database used for future research.


Since Eliapharma is a research lab and our program has research aspirations, the lab can perform TMAU tests and give the results to the person testing without doctor’s order.

Therefore, by signing the agreement and disclosure in the application form, the person testing will be giving his or her expressed written consent for MEBO Research or Eliapharma Services Inc. to divulge only the test results data and voluntary survey information to be shared only with research organizations, such as pharmaceutical companies, university research departments, and any other agency that may have expressed interested in performing in-depth research into TMAU and other causes of unusual and difficult to control body odors.
It is also hoped that those persons testing will also volunteer to fill out the survey created for this purpose. If Eliapharma and this project were not research oriented, we would not be able to perform this TMAU test without a doctor’s orders.

Another reason MEBO has chosen Eliapharma as the lab to work with is because it is the only lab in the Western Hemisphere that is willing to accept specimen from sufferers in Central and South America, as well as from Mexico and other parts of the world.

The TMAU test done through Eliapharma looks for both, Primary and Secondary TMAU, and measures both the TMA levels and the metabolic enzyme function involved in the metabolism of TMA, similar to the way it is done in the United Kingdom. Below is a detailed breakdown of the testing cost:
  • $110.00/US : Eliapharma charges only $110 for the analysis of 2 separate urine specimen collections per kit. With an additional $60/US, another specimen may be tested (up to 4 additional samples at $60 each). More than one person can participate per kit.This is one economical way to test the whole family (up to 6 different people). For 6 people, the test charge would be $350 ($110 for 2 plus $60x4 =$350)
  • $30.00/US per kit: MEBO charge $30 for the kit supplies, insurance for unforeseen damage to specimens in transit, currency exchange fees, and PayPal fees,
  • $10.00/US per kit : to cover the $1,000 investment commitment MEBO Research has made to set up the lab for testing (Eliapharma is investing approximately $2,400).
  • SHIPPING COST : Round trip shipping cost depending on place of residence, which includes ground or lowest shipping cost to send the kit from the lab and priority overnight or 2 day shipping, whichever is lower, for the return kit containing the frozen specimen. This shipping cost will also include any additional fuel surcharge fees or other fees established by FedEx.
Anyone interested in participating in this TMAU phenotype testing and contributing to future research, while we commit to protecting the privacy of your identity, please express interest with an email to, tmautest@meboresearch.org


SEE COMMENTS BELOW FOR Q & A


María de la Torre
President and Executive Director

maria.delatorre@meboresearch.org



Related Posts:

MEBO and Eliapharma TMAU Testing Update 4

INTERNATIONAL TMAU TESTING UPDATE 3

INTERNATIONAL TMAU TESTING UPDATE 2

INTERNATIONAL TMAU TESTING UPDATE

More about TMAU testing through MEBO Research

TMAU Test with Eliapharma through MEBO Research

International TMAU testing in Canada : Special Group Rates

2 comments:

BSC said...

"More than one person can participate per kit."

Does this mean two people can split the regular 2 sample test, one test per each person?

Or is it for the addon/$60 that another person can piggyback into the test (2 tests for one person, 1 test for another person)?

As always, you are doing such AMAZING work MeBO! Thank you! Thank you! Thank you!

Dec 4, 2010, 2:25:00 PM
Maria de la Torre said...

Thank you.
YES IT DOES! You can give one of your samples to anyone you like. This is one economical way to test the whole family (up to 6 different people). For 6 people, the test charge would be $350 ($110 for 2 plus $60x4 =$350)

Dec 4, 2010, 2:30:00 PM
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