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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

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

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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