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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

Monday, November 21, 2016

UK Sheffield statement on TMAU urine test

Sheffield Children's Hospital is the only source in the UK for the TMAU urine/phenotype test.
Recently it was suspended with very little detail given.

UK support group website tmau.org.uk was notified on Friday about the new info.
A statement on the SCH website about the suspension

TMAU testing

Please note, due to analytical issues, the Trimethylaminuria (TMAU) laboratory service is temporarily suspended. This does not affect the clinical referral service.

We fully understand the importance of the Trimethylaminuria (TMAU) testing service and are committed to continuing it.

Since the founder of the service retired two years ago, we’ve invested in new staff for the service and purchased a new specialised testing machine.

Unfortunately we have had some technical issues in recent weeks and have temporarily suspended the service while repairs are made to the machine. We are doing everything we can to get the service up and running again as soon as possible, because we appreciate how much a reliable service matters to the patients we work with.

All the samples already sent us are being stored appropriately at -80 degrees and will be tested as soon as the testing service is restored.

In the meantime, we’ve written to the laboratories and doctors who request tests from us, letting them know about the testing services available outside the UK. We are also pushing through our networks for further testing centres in the UK, to ensure a more resilient service for patients requiring the test.

We hope to restore our own service shortly.

If you would like to be contacted when the service is restored, please give us your email address using this simple form.

Be notified by them when test restarts : Sheff TMAU test restart notification 

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A EURORDIS and NORD Member Organization

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