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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

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MEBO survey for Dr Hazen click here
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Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

MEBO Research Clinical Trials

Tuesday, November 4, 2008

Clinical trial looking for 'known' or 'suspected' metabolic cases

Early news:

The NIH ORD info page on Trimethylaminuria is currently informing that there is a clinical trial ongoing looking for people with known or suspected metabolic disorders of any age. This may be an opportunity for metabolic body odor and halitosis to get recognised by the system. It looks more a training program than anything.

This study will provide medical evaluations for patients with known or suspected metabolic and genetic disorders. It will allow NICHD investigators and trainees experience in diagnosing, managing, and treating patients with metabolic and genetic disorders who may not be eligible for an active NIH research trial. Participants in this protocol will only have tests and procedures used in the standard practice of medicine; there will be no experimental tests or treatments. Patients who are found eligible for an active research protocol will be offered participation in that study. The medical evaluations in this trial may uncover new disease processes that prompt new research initiatives.
http://www.clinicaltrials.gov/ct/show/NCT00025870?order=1%27Studies

http://rarediseases.info.nih.gov/GARD/Disease.aspx?PageID=4&DiseaseID=6447&expand=ResearchClinicalTrials#ResearchClinicalTrials


Did you apply ?


Study ID Numbers: 020023, 02-CH-0023
First Received: October 27, 2001
Last Updated: October 30, 2008
ClinicalTrials.gov Identifier: NCT00025870
Health Authority: United States: Federal Government

Contacts
Contact: Patient Recruitment and Public Liaison Office (800) 411-1222
prpl@mail.cc.nih.gov
Contact: TTY 1-866-411-1010

Locations
National Institutes of Health Clinical Center, 9000 Rockville Pike, Bethesda, Maryland, United States, 20892

Keywords provided by National Institutes of Health Clinical Center (CC):
Genetics
Metabolic
Dysmorphology
Training
DNA
DNA Testing
Dysmorphic Syndromes
Developmental Delay
Genetic Counseling
Molecular Genetics

Study placed in the following topic categories:
Metabolic Diseases
Genetic Diseases, Inborn
Metabolic disorder

Additional relevant MeSH terms:
Pathologic Processes
Disease

ClinicalTrials.gov processed this record on November 03, 2008

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