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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

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BO Sufferers Podcasts

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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

Wednesday, July 30, 2014

MEBO Research supports the RE(ACT) crowdfunding platform for funding TMAU research projects

RE(ACT) TMAU group
15 members needed to be 'open for projects'
Current total : 5

Sign up here
tick 'patient' and
choose 'Trimethylaminuria'
MEBO Research supports RE(ACT) TMAU group on the RE(ACT) crowdfunding platform, a website specially tailored to allow the public to fund rare disease research projects which are unlikely to get funding elsewhere.

MEBO Research has become aware of a relatively new website that is specially suited to allow 'patients' and 'researchers' to come together to fund projects of any particular 'rare disease'. I nthe case of our community, the 'rare disease is Trimethylaminuria (TMAU)

The RE(ACT) (commonly known as REACT ) webpage for the TMAU community can be seen here :
RE(ACT) webpage for Trimethylaminuria group
RE(ACT) platform Homepage

REACT is part of the BlackSwan Foundation, a registered Swiss charity that has supporters (in name only) such as Eurordis who fund rareconnect.org. REACT is a very new project. It's first approved project for crowdfunding only opened for crowdfunding this week.
melanocytic nevi project

Each research project has to be approved by REACTs scientific committee before it can be open to crowdfunding. It is expected that any project put to the committee should have a decision made within 3-5 weeks. REACT has a 10% admin fee from each donation to cover admin costs etc. Payments are via Paypal but you don't need a Paypal account.

TMAU and REACT :
This is an opportunity to inform TMAU/FMO3 researchers of this opportunity, so that they may put their projects forward and if approved will be available for the public to fund.

Each rare disease has it's own page on the REACT site. In our case Trimethylaminuria will be the natural page to gather in. Each group needs 15 members/followers in order for REACT to be satisfied there is interest in TMAU. People can sign up as 'patients', and esearchers can also sign up. Once the group reaches 15 members it is 'open for business' and researchers can then start putting projects forward. Each disorder (inj our case TMAU) also has a general fund that people can donate to. You do not need to be a member to donate.

To sign up, you go to the sign up page and if you are a patient you would tick 'patient'. A dropdown list then appears and you would choose trimethylaminuira from the list.

It is early days both for REACT and in what MEBO Research knows about the platform. But MEBO are satisfied REACT is genuine and an exciting new platform that may show a new model as to how research projects can be funded.

MEBO fully supports RE(ACT) and encourages TMAU sufferers to sign up to the REACT TMAU group. MEBO is aware of one researcher who has an interest in the REACT platform although presently this does not mean any project would go ahead or be approved. Nevertheless it will be there for all researchers in the future to put projects forward.

Here is the REACT TMAU sign up page. Tick 'patient' and from the dropdwon list choose trimethylaminuria
signup page for RE(ACT) TMAU group

1 comments:

Anonymous said...

I would like to know if Grape Seed Extract contains DMB?

Feb 12, 2016, 8:49:00 AM
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