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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

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Full details : https://goo.gl/TMw8xu
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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
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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

Friday, November 11, 2016

UK NHS TMAU Test Campaign : Health Committee

Sheffield TMAU urine test 
Discussion :
It seems the UK NHS (and probably all national health systems) do not have a 'rare disorder test strategy' outside of those disorders that are part of the National Screening Program. Possibly there is also not a 'test strategy' among the health system rare disorder test labs, meaning it's probably up to the staff/management which rare disorders they decide to test for, and often it will mean a rare disorder may have only one national lab testing (if at all), and no secured source of the test.

As we move ahead with TMAU testing (and indeed for all rare disorder tests), it would seem a good idea if governments have a 'rare disorder test strategy' which will be a law the national labs must respect.

UK
One possible way to put pressure on UK labs to have a national strategy would be to contact the Parliament Health Commitee. Sometimes they look at cases, perhaps even just for a few hours.

NHS 
An aim would be to order the UK NHS rare disorder labs to have a strategy to make TMAU urine testing available at all times (e.g. not relying on one source) and preferably being available at more than one lab (preferably many/all) to perhaps drive up standards, drive down cost etc.

Direct-testing
An ideal option would be to be able to test direct, but it's unlikely the committee would approve this, as health systems are set up to 'protect the unwell person' or something. In reality this policy creates a monopoly/cartel/regressive system. The committee looked at this system for HIV testing an made direct testing an option (i.e. they looked at how the system affected testing for a serious disorder).

message from Karen, MEBO PR Director, about the UK Health Committee     

Another place to contact regarding a request for a specific policy regarding NHS TMAU testing:
Health Committee - examines policy issues related to the Department of Health and its associated bodies.

Health Committee
House of Commons
London
SW1A 0AA
Telephone: 020 7219 6182

Email: healthcom@parliament.uk

http://www.parliament.uk/business/committees/committees-a-z/commons-select/health-committee/contact-us/

Whether the Sheffield lab test is restored or not, it should be a priority for our community to get a reliable, accurate testing facility established in the UK. The phenomenon of false negatives is not uncommon, and people may need to test more than once. A secure test is needed in any case.


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A EURORDIS and NORD Member Organization

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