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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
want listed ? contact info@meboresearch.org

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

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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

Monday, September 1, 2014

Writing testimonials in the RE(ACT) TMAU group

RE(ACT) Crowdfunding site especially for rare disorders including TMAU

Link to RE(ACT) TMAU group

RE(ACT) is a Swiss charity, part of the BlackSwan Foundation. It is a recently started website intended to allow rare disorders to raise funding for projects. In particular it wants to attract researchers to put forward projects which the public may then donate to. So far only one project has been put forward on the whole website and that only went live about 1 month ago. (pilot study for CMN disorder)

About posting in the RE(ACT) TMAU group
Sufferers can interact with researchers on the RE(ACT) website by posting their 'experiences' of their condition. This is the same concept as writing a 'testimonial' on the Rare Connect TMAU group page.

RE(ACT states about the idea behind the 'experience' pages :

  I am a patient and I want to meet other patients, is the RE(ACT) Community a Patient Network?
• Our community is principally addressed to researchers and to patients and/patients organization which are actively implicated in research projects. If you want to meet patients and share your experience we suggest you to use the Eurordis' RareConnect platform. The RE(ACT) Community encourages patients to share their knowledge and experiences on treatments or to provide other scientific observations  to researchers in order to give them a better understanding of the disease and help them in finding new treatments.
Link

Donating to the RE(ACT) TMAU group
People can donate to the RE(ACT) TMAU group via paypal, either by being signed in or donating anonymously. 10% of the donation goes towards RE(ACT) admin costs. Perhaps over time this fee will drop. Any money given to the TMAU group will be kept in the general TMAU fund until a project is approved which will then be given any accrued money.

Signing up to the RE(ACT) TMAU group
Many people have said they have not been able to sign up to the RE(ACT) TMAU group. It seems that quite often the clarification email is in the spam folder, although sometimes does not arrive at all. RE(ACT) is in beta mode, and hopefully the bugs will eventually be ironed out.

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