Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out

Labels

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

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

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, August 18, 2016

UPDATE: MEBO TMAU Test Program 2016


After the 4th of July weekend, I wrote a post in this blog announcing that the MEBO TMAU Test Program was resuming. I have been diligently working on the wait list, first with domestic US shipments, and I will be shipping internationally soon, once this first phase is completed. If you have partially filled out the online Requisition Form and submitted it incompletely, your name will be skipped. It is your responsibility to provide me with the necessary information asked for in the application, in order for me to do my job and give you a cost breakdown of the test and shipping cost. It is impossible to provide shipping information without an address and phone number, since the carriers won't give quotes without it.

You can email me at maria.delatorre@meboresearch.org to give whatever information you have failed to provide in your application if you are still interested in doing this test.

If you have been thinking about doing this test, this is definitely the best time to do your test in order to get your results more quickly - sooner than later.
As of today, I have sold 18 tests, of which I have received 11 samples for Batch #16. I have to wait to get 20 samples in order to send this batch to the lab in dry ice. This is the agreement we have with the lab in order to get the low cost of the test. Once I ship a batch to the lab, they have 30 days to send me the results on a spreadsheet of all 20 samples. I then transcribe each one within a day or two to individual reports and email them to each respective participant.

If you have been thinking about doing this test, this is definitely the best time to do your test in order to get your results more quickly - sooner than later. You can fill out the Requisition and Disclosure Form completely to begin the process. Once I ship the 20 samples to the lab, then we will have to start a new batch, and it may take months to get another 20 samples for Batch #17 and one more month to get the results from the lab.

I hope this gives everyone an idea of how long the process can take.

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)


get New Posts by EMAIL : Enter your email address :



A EURORDIS and NORD Member Organization

0 comments:

Post a Comment