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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
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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

Friday, October 1, 2010

International TMAU testing in Canada : Special Group Rates

tmau triemthylaminuria testingMEBO Research, Inc. and Eliapharma Analytical Services, Inc. in Laval, Québec, Canada have entered into a joint undertaking creating a low group rate Testing Program initially for TMAU phenotype (urine) test, and eventually for TMAU genotype (genetic testing) and other body odor related tests. The TMAU urine test will be for TMA & TMAO as well as creatinine, and will be done using mass spectroscopy. A physician referral is not needed to be tested. Eliapharma is charging $110 for 2 urine samples test per kit, a $30 fee for the kit, plus a $10 donation for MeBO to invest in its Mission and Strategies as described in MeBO’s tmau testingwebsite. This $150 cost includes a kit containing 2 glass tubes, two 4mL of 6N HCL, gloves, ice pack, an insulated container, and a box for round trip shipping. In order to be able to provide such a low group rates, it will be necessary for the lab to store the frozen samples and to wait for samples from 30 persons be collected. Each person can collect two samples at different times before shipping them back to the lab.

FedEx assures us that they can offer 48 hour shipments from anywhere in the world.
In an effort to create a “One Stop Shopping” experience for those members of our international community to be able to test comfortably, MEBO Research is having negotiations with FedEx, and initially with the Canadian and US Customs Agencies to arrange low roundtrip shipping rates of the kit to the person testing with a return shipping label, International Airway Bill, and Commercial Invoice. This will allow the person testing to not have to deal with these concerns. These negotiated international shipping rates, which are normally costly (precisely because the samples need to be shipped to arrive within 2 day) are yet to be determined. The shipping rate will be based on MeBO’s earned discounts (bulk rates). After this initial shipping phase is established between and within Canada and the United States, MeBO will then proceed to begin consulting with Customs Agencies of other countries, one country at a time in an effort to expand this service to all countries around the world that would have at least one sufferer wishing to test. FedEx assures us that they can offer 48 hour shipments from anywhere in the world. This may not apply to some very remote areas, thus instead of door-to-door service, some countries may allow to hold for pick-up at a FedEx Office, or airport to airport service.

Since shipment of samples from countries that are at a greater distance from Canada than the US may be more costly, it is MeBO’s intentions to pursue grants that would further assist us in providing free testing opportunities in the name of research. Anyone wishing to test is invited to participate in an OPTIONAL and VOLUNTARY confidential survey so that we may acquire data in an effort to establish a platform for research. These efforts are very much geared toward our primary goal – to research into all types of body odor conditions of persons with a positive and a negative TMAU test result.

The following highlights the benefits to this program:


  1. A doctor’s referral is not necessary since we are collecting data for future research
  2. Two vials of urine specimen per kit, which may be collected on different days, per person for $150 plus shipping
  3. The speed of receiving test results depends on how quickly 30 persons submit their samples
  4. The more people test, the lower the shipping cost
  5. Confidential test records will be used to pursue research grants from international private and government agencies.
  6. Those persons who test will be the first to be invited to participate in grant-funded studies, providing additional testing free of charge. This will be on first come first served basis based of date tested
  7. This program’s primary aim is to systematically provide testing as affordably as possible to all sufferers throughout the world, most of whom currently do not have any testing opportunities whatsoever

Once the phenotype testing is underway, MeBO and Eliapharma intend to add genotype testing as well, hopefully, also with a good bulk rate, depending on the volume of phenotype (urine) tests already performed. We hope to progressively add other Body Odor related tests to our list of tests, so as to offer all sufferers from around the world a worthwhile, low cost “One Stop Shopping” to help each of us arrive at a proper diagnosis of each and all body odor conditions.

Anyone interested in participating in this program may email tmautest@meboresearch.org to place yourself on the waiting list with no obligation. As soon as the shipping costs are established, it will be announced in this blog and MeBO’s website, and we will get back to you when the testing process is initiated. Eliapharma have guaranteed that they will have the test-process set up within 3 weeks of the 30 kits being returned to them. As soon as arrangements are made with the Canadian and US Customs Agencies, we will contact another Customs Agency of whichever government sufferers asks us to consult. It will be on a first-come first-serve basis. So no matter what country you are in, if you wish to test, please send an email to tmautest@meboresearch.org with no obligation to participate. PLEASE NOTE WHAT COUNTRY YOU'RE IN ON THE EMAIL. Once we receive the negotiated shipping rate information from FedEx, we will contact you.

María de la Torre
President and Executive Director
maria.delatorre@meboresearch.org



Related Posts:

MEBO and Eliapharma TMAU Testing and future research goals

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

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