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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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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

Thursday, January 2, 2014

BRAZIL TMAU Urine Test Program to be launched 06 January 2014!

Original em português

It is with great enthusiasm that I announce that a partnership has been formed with DLE- Medicina Laboratorial in Brazil to launch the first TMAU Urine Test in Latin America with MEBO Research on January 6, 2014. DLE has offices in two cities in Brazil, where anyone interested in doing the test can purchase their kit in person. Below is a program Introductory Letter from the DLE Administration addressed to our community. Please refer to the DLE website for additional information.

Patient information will not be disclosed by DLE to MEBO with the shipment of urine samples. Each patient’s samples will have a kit number that MEBO will use to give the test results on a spreadsheet to DLE. In turn, DLE will deliver the results to each patient according to their standard procedures.

Initially, the TMAU Urine Test provided by DLE will be available to the Brazilian public effective January 6, 2014, and eventually, we hope it will be extended to other countries as well. We extend our most deeply felt gratitude to the DLE administration for providing this service to our community.


INTRODUCTORY LETTER FROM DLE ADMINISTRATION:


"Since 1986, DLE-Medicina Laboratorial has been processing specialized tests with new technologies and new analytical methods. Many of these tests are related to rare diseases with affected individuals encountering many obstacles, frequently for many years, before arriving at a diagnosis, as is the case for persons with Trimethylaminuria (TMAU).

In February 2013, DLE incorporated the FMO3 gene sequencing test, reducing its cost by 40%, which allows more patients to have access to genetic diagnosis.

In an ongoing effort to promote accessibility to persons with rare diseases, DLE has partnered with MEBO Research to provide the Trimethylaminuria urine test for potential research throughout the Brazilian territory. The test will become available on January 06, 2014.

This test allows for a diagnosis of both Primary Trimethylaminuria (TMAU1), Trimethylaminuria linked to FMO3 gene, and Secondary Trimethylaminuria (TMAU2), which is secondary to other medical conditions. This test can also be used to monitor the progress of treatment.

This diagnostic test examines the excretion levels in urine of trimethylamine (TMA), which is responsible for the odor, and of trimethylamine N-Oxide (TMAO) 12 hours after a choline load (choline tablets provided in the sample collection kit).

How do I prepare for the test?

The day before urine collection, the patient should avoid eating foods that may interfere with the test. In addition, it is important to rule out a urinary tract infection, which can alter the levels of trimethylamine.

Test results turnaround time

is approximately 60 working days, subject to change based on the need for a minimum number of samples required to complete a batch in order to be analyzed.

To arrange for the TMAU Urine Test,

simply contact a DLE branch, DLE- São Paulo or DLE - Rio de Janeiro, to pick up a sample collection kit. The cost of the test is R$800,00 to be paid in full when picking up the kit.

For customer convenience, the sample kit can be shipped to and picked up from the client’s home in all Brazilian states by our specialized logistics, at an additional flat rate of R$200,00. Before ordering the kit, one should check available shipping logistics to your home by calling 4020-8080, local calling charges apply, or email us at canaldocliente@dle.com.br.

For more information, please visit our website, dle.com.br/tmau."

RIO DE JANEIRO
Av.NSde Copacabana
1018 7th / 8th floors
Rio de Janeiro / RJ
CEP 22060-002
Tel: (21) 3299-3000
Fax: (21) 2521-9928
SAO PAULO 
dlesp@dle.com.br
Mato Grosso Street, 306
Shop 7 - Morumbi 
São Paulo / SP 
CEP 01239-040 
Tel: (11) 2114-6440 
Fax: (11) 2114-6441

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)


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A EURORDIS and NORD Member Organization

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