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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

Friday, October 29, 2010

INTERNATIONAL TMAU TESTING UPDATE 2

trimethylaminuria testI would like to thank the 21 people who have inquired about MEBO Research's upcoming International TMAU Testing Program with Eliapharma Services Inc. At this time, we have 19 persons confirmed on the waitlist, even before we have completed all the preparations to begin testing. Testing will be done in batches of 60 specimens (two samples per person), and it looks like we'll get the 30 people by the time we are set up to test. This strong support is very much appreciated, and we are that much driven to ensure that we offer everyone the highest quality testing experience.

I am currently finalizing the training program on international shipping provided to me by FedEx particularly regarding the shipping process to and from the Canadian Lab to as many countries as necessary. My 30 years experience in the airline industry has given me significant expertise in international travel involving Customs procedures and now national security concerns. Now, instead of transporting passengers internationally, MEBO will be shipping medical kits and human specimens with some similar procedures but with significant differences. Eliapharma has already submitted the application for the Import/Export Permit from the Canadian authorities.

Eliapharma is setting up the validation process to run the tests. This lab has just received the trimethylamine (TMA) ordered from a chemical manufacturer to test multiple urine samples of persons without body odor conditions by adding controlled levels of TMA in the urine in order to ascertain how long the specimen will remain intact from a frozen state to room temperature before the TMA begins to evaporate to such a degree as to render the test inaccurate. The test will involve the use of a couple of different stabilizing acids to see which works best preserving the specimen for a longer period of time. We consider this to be a very important measure for us to take in order to ensure the quality of the specimens and accuracy of the tests. Meanwhile, the lab is also setting up and validating the equipment with the required trial runs, etc.

These and other procedures are very important steps that we are committed to taking, since we want to extend this testing opportunity to as many people from distant countries while securing an accurate and high quality testing process. We want to ensure that we use the proper kit supplies to protect the specimen, the proper shipping plan for timely delivery, and to have in order all government required documentation, such as Commercial Invoice, Airway Bill, return prepaid shipping label, and others (depending on countries involved), so that the specimen is not delayed in transit or at Customs, in order that it does not become corrupt and then consequently give inaccurate results. This process is also very user-friendly for the person testing, since all the documentation required by the respective governments will be prepared and prepaid in advance by MEBO Research.

I am a firm believer in establishing a good foundation in any and all projects I undertake, and this very important setting-up process is no exception. I always prefer quality over quantity to provide a flawless process; and if we hurry through this stage, we open ourselves to paying dearly for it in the long run with inaccurate results and damaged specimens.

Therefore, after discussing it with the president of Eliapharma, we believe that we will be in a good position to begin shipping out the kits on November 18th to those persons who have put their names on the waitlist. If you are interested in signing up to have your TMAU phenotype (urine) test done through MEBO Research and Eliapharma, you may send MEBO an email at tmautest@meboresearch.org, with no obligation to participate. In order to best calculate shipping costs, I would need to know the country, address (with postal code), and phone number of anyone requesting a kit. I will send you an email quoting an all inclusive rate once all preparatory arrangements have been finalized.

If you are still interested in testing at that time, you may fill out and submit the application with your payment in full through PayPal. An optional online survey will become available to you that you may fill out for future research purposes, though participation is strictly on a voluntary basis. MEBO and Eliapharma commit to strict confidentiality codes of ethics. Upon receipt of payment and the application, a kit will be mailed to you with clear instructions on how to do your choline load as well s your specimen collections and handling. All the necessary documentation, such as Customer Invoice, Air Waybill, and your return postage label will be included in the kit.

I appreciate your patience and support.

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

More about TMAU testing through MEBO Research

TMAU Test with Eliapharma through MEBO Research

International TMAU testing in Canada : Special Group Rates

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