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MEBO TMAU TESTING CURRENTLY SUSPENDED INDEFINITELY

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 Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
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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
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MEBO Research Clinical Trials

Click here to read details of the MEBO Clinical Trials
NCT03582826 - Ongoing not recruiting
Microbial Basis of Systemic Malodor and PATM Conditions (PATM)
United States 2018 - ongoing

NCT02683876 - Completed
Exploratory Study of Relationships Between Malodor and Urine Metabolomics
Canada and United States 2016 - ongoing

NCT03451994 - Completed
Exploratory Study of Volatile Organic Compounds in Alveolar Breath
United Kingdom and United States 2013 - ongoing

NCT02692495 - Completed
Evaluation of Potential Screening Tools for Metabolic Body Odor and Halitosis
United Kingdom 2009 - 2012

Tuesday, September 10, 2013

Volunteers needed for interview with Rare Genomics Institute

This is a a comment made by a team member of Rare Genomics Institute, Divya, on a thread in RareConnect on August 12th, but I was not able to reply until now. To find the original comment, you first need to go to the Trimethylaminuria (TMAU) Community site, and then go to the post "Just A Guy who suffers from TMAU." My reply to Divya’s original post follows her comment below.


ORIGINAL POST:


Hello!

My name is Divya, and I am part of a team currently participating in an internship with the Rare Genomics Institute. The Rare Genomics Institute is a not-for-profit organization that supports families who are affected by rare diseases. As the majority of rare diseases are genetic in nature, the Rare Genomics Institute uses donations and grants to give patients access to cutting-edge technologies and leading medical experts by funding full genome sequencing for patients. By analyzing the results, experts hope to find the cause of the disorder. From there, treatments and therapies are developed in an attempt to cure the disease.

To learn more about the Rare Genomics Institute and read some of their patients’ stories, please visit: http://www.raregenomics.org/.
As a part of our internship, we would like to interview individuals affected by a rare disease (patients, family members, etc.). The purpose of the interview will be to discuss the impact of rare diseases and the difficulties of coping with them. This will help the Rare Genomics Institute better understand patients’ struggles and allow them to determine how best to care for their patients.

If you, or any other individual diagnosed with this disease would like to share your story with us in an interview- please do not hesitate to contact us at rgi.internship@gmail.com.


Best,
Divya (anon049eb387)


MEBO'S REPLY TO DIVYA:

Hello Divya (anon049eb387),

Thank you for writing about Rare Genomics Institute and inviting us to tell our story. I would love to do all possible to assist your internship program to interview individuals affected by a rare disease. I wonder whether you mean that you are looking for someone already diagnosed with the genetic type of TMAU or someone with life-disruptive odor symptoms for whom no test has yet identified the cause and no diagnosis has been given.

Some of the MEBO Directors and I have had the privilege of meeting Dr. Jimmy Lin, MD, Founder of Rare Genomics Institute, on a conference call. Dr. Lin is also a member of the MEBO Institutional Review Board (IRB). He is indeed inspirational, and MEBO would do all possible to assist Rare Genomics in whichever way we can. Please don't hesitate to contact me at maria.delatorre@meboresearch.org.

María


María de la Torre
Founder and Executive Director

A Public Charity
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