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

Monday, February 1, 2010

TMAU genetic testing in Spain



This lab looks for mutations in the FMO3 gene, and if they cannot find any, they proceed to look at other TMAU or other body odor related genes: SLC22A1, DMGDH, SDH, FMO1.We are most grateful to a member of our community, Natalia (Nata_80/Jersey), who has done us the favor of obtaining important genetic TMAU and FMO3 testing in Valencia, Spain, at the Hospital Clínico Universitario de Valencia, Instituto de Investigación Sanitario, Fundación Investigación Clínico de Valencia (INCLIVA) headed by Dr. Javier Chaves. Nata relays the following information:


This clinical hospital in Valencia is doing genetic analysis of this condition [TMAU]. It also accepts and analyzes samples from other countries.

The lab looks for mutations in the FMO3 gene, and if they cannot find any, they proceed to look at other TMAU or body odor related genes: SLC22A1, DMGDH, SDH, FMO1.

These tests require a physician referral (public or private, who would need to assume the cost of these tests)…

Contact information:

Unidad de Genotipado y Diagnóstico Genético
Fundación Investigación Clinico de Valencia-INCLIVA
AVDA Blasco Ibañez 17
Valencia 46010
telefono: 963862664
fax: 963862665
email: a.barbara.garcia@uv.es


PLEASE NOTE that TMAU urine tests are not done here, although measures to set up this type of test are underway. Normally, in the TMAU diagnostic process, the urine is tested first, and if there is an excess of TMA, the gene test is then performed. I don’t have any knowledge of other labs in Spain that do urine tests. However, there are labs in other European and American countries. Perhaps they will receive samples from other countries.


Additional information provided by Ana Barbara Garcia of the Unidad de Genotipado y Diagnóstico Genético [The Genotyping and Genetic Diagnostics Unit]:

Yes, we perform genetic diagnosis of trimethylaminuria. However,
samples should be sent from a hospital or medical practice.

The procedure of this diagnosis involves 3 steps, although you
may decide to perform all of them or only the first:

1- FMO3 gene analysis: Most mutations responsible for the disease have
been described in this gene. The cost of this analysis is (350€)

2- If no mutations have been found in step 1, we propose to analyse 2
other genes, where some mutations have been found: SLC22A1 (500€) and
DMGDH (600€).

3- If no mutations are found: we propose to analyse 2 genes. They have
a role that make them good targets responsible for the disease:
SDH (750€) and FMO1 (400€)


If you are interested, I would email your medical doctor the instructions and all the documents that should be filled.


Thank you very much for your interest.

Sincerely:

ANA BARBARA GARCIA

********************************
ANA BARBARA GARCIA GARCIA

Unidad de Genotipado y Diagnóstico Genético
Fundación Investigación Clinico de Valencia-INCLIVA

AVDA Blasco Ibañez 17, Valencia 46010

telefono: 963862664
fax: 963862665
email: a.barbara.garcia@uv.es


En español

0 comments:

Post a Comment