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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

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

Saturday, May 5, 2012

MEBO Research Institutional Review Board (IRB)

THE MEBO RESEARCH
INSTITUTIONAL ETHICS REVIEW BOARD

In an effort to protect the well-being and rights of sufferers who participate in any international studies initiated by MEBO Research, the MEBO Institutional Review Board (IRB), IRB00008681, was registered on February 8 ,2012 with the U.S. Department of Health and Human Services,
  • IRB Organization, IORG0007232,
  • Federalwide Assurance, FWA00018466.
The purpose of this Independent Ethics Committee or Ethical Review Board is for MEBO and research study participants to address procedural and ethical questions to the IRB members as studies are conducted and new programs are developed. This Board consists of four (4) Primary Scientific members and three (3) Non-scientific Specialty members.


MEBO INSTITUTIONAL ETHICS REVIEW BOARD

In support of MEBO's Privacy policy, MEBO Research, Inc., has formed and registered an Institutional Review Board (IRB) to oversee all of MEBO's studies involving human subjects to assure that the Federal Policy for the Protection of Human Subjects are adhered to.

It has been, and will continue to be, MEBO Research's focus to establish a strong foundation upon which our international community of sufferers can rest to find organizational strength in order to bring about substantial changes to sufferers' lives by initiating research to find the proper treatment for all types of body odor conditions, including rare diseases, such as TMAU and other yet-to-be-defined genetic conditions that result in chronic and difficult to control body and breath malodor.

For more information, please contact,
maria.delatorre@meboresearch.org.
María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



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A EURORDIS and NORD Member Organization

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