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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

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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

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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
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Blog Archive

UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :
https://meboresearch.co.uk/index.php/living-with-tmau-lwtmau-study/

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

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

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

Wednesday, February 17, 2016

ClinicalTrials.gov approval MEBO Metabolomic Study for Malodor

a  PATIENT ADVOCACY International campaign to research SYSTEMIC BODY ODOR AND HALITOSIS

A 501(c)3 Public Charity, USA
A Not For Profit LTD Company, England and Wales


Approved Exploratory Research Study

Exploratory Study of Relationships Between Malodor and Urine Metabolomics
(ID: 201505010014MEBO/ NCT02683876)

Clinicaltrials.gov is maintained by the National Library of Medicine (NLM) at the National Institutes of Health (NIH). This site receives over 200 million views per month and 65,000 unique visitors daily.
I am very excited to announce that on February 16, 2015, the new MEBO Research sponsored clinical trials, the Exploratory Study of Relationships Between Malodor and Urine Metabolomics (ID: 201505010014MEBO) has been approved and assigned research number NCT02683876 by the U.S. Clinical Trials.gov Protocol Registration and Results System after they reviewed the protocol information that fulfilled their requirements and received the human subjects review board approval from the MEBO Institutional Review Board (IRB).

This information can be found on the Clinical Trials website at,
https://clinicaltrials.gov/ct2/results?term=NCT02683876&Search=Search

MEBO's Scientific Director, Irene Gabashvili, PhD. is representing MEBO as the registered U.S. Principal Investigator of this study, and she is collaborating with the registered Principal Investigator, David Wishart, PhD, of the Metabolomics Innovation Centre (TMIC) of the University of Alberta, in Edmonton, Canada.

Clinicaltrials.gov is maintained by the National Library of Medicine (NLM) at the National Institutes of Health (NIH). This site receives over 200 million views per month and 65,000 unique visitors daily.

Metabolic profiles will be identified using the metabolomics equipment located in the NMR, HPLC, and MS facilities of the Metabolomics Innovation Centre (TMIC).
In this study, metabolite profiling analysis will be carried out on urine samples of individuals with malodor conditions related to metabolism inefficiencies. Metabolic profiles will be identified using the metabolomics equipment located in the NMR, HPLC, and MS facilities of the Metabolomics Innovation Centre (TMIC). Multivariate statistical analyses will be used, as well as other approaches to mine complex data from heterogeneous sources.

PURPOSE OF THIS STUDY


The pilot study is commencing involving participants who reside in Canada and suffer from a malodor condition, and based on results, will expand to include sufferers from other countries.
FOR NUTRITIONAL AND METABOLIC DISEASES
RESULTING IN MALODOR CONDITIONS

The purpose of this study is to identify metabolic signatures associated with malodor conditions. The investigators will perform state-of-the art metabolomics tests and bioinformatic data mining to explore whether conditions leading to malodor can be screened by metabolomic profiling of urine samples.
So we are ready to start the study and are excited to work with Dr. Wishart.

PRIMARY OUTCOME MEASURES


Differences in metabolite concentrations measured by mass spectrometry, comparing urine samples from individuals with malodor issues, and age-matched healthy controls. The investigators would like to validate if urine metabolomic profiling can be used for identifying key metabolomic signatures associated with malodor.

SECONDARY OUTCOME MEASURES


Correlations between urine biomarkers and frequency/severity of malodor symptoms (questionnaires). The investigators will comprehensively analyze the ability of metabolite levels to discriminate frequent and severe from non-severe malodor symptoms.

GROUPS/COHORTS


  1. Subjects with malodor: individuals with self-reported odor issues suspected to be associated with microbial imbalance on or inside the body and inefficient metabolism as evidenced from other laboratory tests.
  2. Healthy control: individuals not complaining of uncontrollable or unpredictable malodor episodes.

RECRUITMENT


All recruitment will be performed exclusively by MEBO.
All recruitment will be performed exclusively by MEBO. Anyone interested in participating in this program can express interest by email to maria.delatorre@meboresearch.org. Please provide your legal name, address, and email address where you will be contacted to be invited to participate in the study.
At the present time, the pilot study is commencing involving participants who reside in Canada and suffer from a malodor condition, and based on results, will expand to include sufferers from other countries. If you qualify and are interested in being a participant in the pilot study and have not yet been contacted, please express interest to the email above.

CONFIDENTIALITY


In an effort to maintain the integrity of the study, the staff at TMIC will not have any of your personal information, and you may be disqualified from the study if you contact the lab directly and divulge personal information.
Confidentiality is of the utmost important to MEBO and to this study. All information will remain confidential, and no one outside the MEBO staff in charge of this program will not have access to any of your personal information. In an effort to maintain the integrity of the study, the staff at TMIC will not have any of your personal information, and you may be disqualified from the study if you contact the lab directly and divulge personal information. All contact must be made through MEBO exclusively. Your cooperation in this matter would be greatly appreciated.



María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
www.mebo.com.br/
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4 comments:

Anonymous said...

Maria is this related to Trinzyme in anyway? Wouldn't this exploratory study benefit Trinzyme?

Feb 17, 2016, 9:15:00 PM
Stephanie said...

What a great study! I can't wait to be a part of it. Not only will it guide us to identify other malodor diseases it can also let us know what to avoid in our diet, if low choline isn't working for us.

Feb 21, 2016, 4:03:00 PM
Maria de la T., Founder and Executive Director, MEBO Research said...

Hi Anonymous,

No, the MEBO Metabolomic Profile research is not related to Trinzyme in any way. Trinzyme is concentrating more a treatment forTMAU, whereas, the MEBO metabolomic research is all about identifying metabolites and their levels in the urine to compare them to participants that do not suffer from odor conditions. The hope of carrying out this exploratory study is to create a metabolomic profiles of one or more odor conditions. This will probably include TMAU, as well as others yet to be identified, which we hope this research will do.

It's impossible to control or cure a condition that has not been discovered (identified). This will be step #1.

Feb 29, 2016, 2:53:00 PM
Maria de la T., Founder and Executive Director, MEBO Research said...

I agree Stephanie. And more importantly, it will guide sufferers who do not have TMAU towards a better targeted protocol, as opposed to a low choline diet, which they don't need and is bad for their liver.

Feb 29, 2016, 2:54:00 PM
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