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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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Blog Archive

London TMAU meeting with Prof Liz Shephard
19th Oct 11am - 1pm
St Mary's Hospital
Praed St, Paddington
London W2 1NY
click to read more
more details : karen.james@meboresearch.org

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

Thursday, March 21, 2019

Upcoming Conference in Netherlands and Belgium April 2019

In collaboration with a small group of TMAU sufferers, the VKS has organized the first official national conference for people dealing with odor conditions, including TMAU. Two guest speakers will give a presentation, Professor Ron Wevers, PhD., expert in the field of genetically determined odor conditions, Radboud UMC "Malodour", and a dietician (To be announced).


DATE: Saturday, April 13, 2019
TIME: 2:00 pm to 5:00 pm
LOCATION: Accommodatie Domstad, Koningsbergerstraat 9, 3531AJ Utrecht
LANGUAGE: The conference will be in Dutch
REGISTRATION:
People can sign up for the conference by sending me an email at crosalia26@gmail.com.
Enrollment has to be as soon as possible, before the end of this month (March).

PROGRAM:

2:00 pm - 2:20 pm: Walk-in with coffee and tea
2:20 pm - 2:30 pm: Welcome by Crissan Rosalia, Health Psychologist, MSc., MEBO Mental Health Director
2:30 pm - 3:30 pm: Presentation on "Malodour" by Professor Dr. Ron Weber, Radboud University Medical Center
3:30 pm - 4:00 pm: Presentation by dietitian (to be announced)
4:00 pm. - 4:30 pm: Discussion / Exchange experiences

LANGUAGE: Dutch
People can sign up for the conference by sending me an email at c.rosalia26@gmail.com
Enrollment has to be as soon as possible, before the end of this month (March).
We are most grateful to Crissan Rosalia for reaching out to experts representing our community in hopes to establish a coordinated effort to find answers, solutions, and some day, a cure.


Some information on Dr. Wevers' work:


"Wevers : New gene suspect for METABOLIC MALODOR : SELENBP1"

Pubmed : SELENBP1 abstract paper



Dr Wevers webpage

Media links on the story :
Gizmodo
Medical Xpress
Science Daily
Genengnews
UCLA press release


María
María de la Torre
Founder and Executive Director



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A EURORDIS and NORD Member Organization

1 comments:

Anonymous said...

Hi,

Is it possible to live stream for those of us who can't attend?

Thanks

Apr 4, 2019, 9:45:00 PM
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