Join/Watch the weekly
TMAU UP Podcasts

MEBO Private Facebook Group
to join : contact
maria.delatorre@meboresearch.org

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact map@meboresearch.org

MEBO TMAU urine test

MEBO Research
TMAU Urine Test
United States only
PROGRAM IS PERMANENTLY SUSPENDED AS OF 2 MAY 2017

Click here for
REQUISITION FORM
Incomplete applications
will NOT be processed

SEE UPDATES HERE

1
test
$150 plus
shipping costs
2
tests
$250 plus
shipping costs

TWO PAYMENT PLAN OPTION
Send email to maria.delatorre@meboresearch.org to arrange, AFTER filling out Requisition Form, please.

Test analysis performed in batches of 20 or more

DATE: 2 MAY 2017
Currently on : PROGRAM IS TEMPORARILY SUSPENDED

Samples analyzed since June 2012 :
352
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
BannerFans.com
RESEARCH DETAILS

DONATIONS THRU 31-NOV-2016:
£ 943.03/GBP
$ 568.00/USD

TOTAL at today's ROE
£0.80/GBP = $1.00/USD

£1,398.07 = $1,745.14

MEBO UK PAYPAL FOR TRINZYME

********
MEBO US PAYPAL FOR TRINZYME

Your currency will be automatically converted to USD or GBP by PayPal.

Option: pay with your credit card instead of PayPal account by clicking on either Donate button above.

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed

Subscribe to Blog

Enter your email address:

Delivered by FeedBurner

You will be sent a verification email

Subscribe in a reader

Blog Archive

Friday, November 4, 2016

UK Sheffield TMAU testing SUSPENDED for unknown time

Sheffield Children's Hospital was the only known source of the TMAU urine test in the UK.
This was entirely down to lab clinician Nigel Manning.
The service ran from about 1998 to 2016.
But Mr Manning recently retired, and it seems the TMAU testing has been suspended.
It is not known how long it is suspended, but it could be forever.
This was the only UK source of the test.

Posted today by admin of tmau.org.uk forum
The admin of the UK TMAU support group tmau.org.uk posted this message today (Nov 4)

Dr Manning has recently retired – due to problems with the assay they have suspended testing for TMAU for the foreseeable future. This is clearly a huge issue for those wanting to be tested,
Currently Sheffield is (was) the only lab in the UK running this test – the alternatives are labs in the US or Netherlands but I have no idea of prices and whether a GP would fund.
Unfortunately Dr Lachmann will not be able to accept any new referrals at the moment as a result.
New information will be posted as and when I receive it. 4th November 2016

 read the post here    

Unacceptable service for a metabolic disorder
It does not seem right that a country depends on a clinician voluntarily setting up a test for a metabolic disorder and the test being seemingly entirely dependent on that person.

Arkansas
A similar issue arose at the Arkansas USA lab. The Denver hospital 'discovered' TMAU and has a history of testing. A Dr who worked with the lab then moved to AK and started testing there. However the testing there also stopped. It seems we are often dependent on unique individuals rather than a national test strategy.

Campaign to find new UK TMAU test lab (NHS at least, but preferably direct-testing)

Perhaps UK readers may feel like trying to do something about this, such as writing an email to 'decision-makers'. For instance the Health Secretary, MP's, regional Hospital Metabolic Test labs etc.

Example email (can be altered etc)
Here is an example email :

Dear

re testing for the metabolic disorder TRIMETHYLAMINURIA (TMAU) in the UK.
NEED FOR A UK LAB TO OFFER THE TMAU URINE TEST.
No UK/NHS lab now offers the test.

Until recently, Sheffield Children's Hospital was the only UK source of the TMAU URINE TEST in the UK. This service seemed to be entirely due to one person (a lab member), who both voluntarily started the service (around 1998) and recently retired.

Now it seems the TMAU test service is to be suspended for an unknown time.

One way of looking at this is that it is unacceptable for a country not to have a 'fixed' test source for a metabolic disorder test. Even better would be if relevant labs were told to offer the test from their own lab and not source it from one national lab.

NHS test service
It would seem sensible for the NHS to offer this test with a secure source at least.

Last known stats for Sheffield TMAU test service (from graph) :
samples tested :
2009 : about 220
2010 : about 590
2011 : about 580

Link to graphs : http://www.meboblog.com/2012/09/tmau-result-stats-from-sheffield-uk.html

Self-pay direct-test would be ideal option
For the community, ability to direct-test and self-pay would be the ideal option, but I understand our country has a 'cartel-type' system which suits NHS workers best.

GP's reaction to patient asking for test :
Never heard of TMAU.
Resents payment of test (even though patient would rather self-pay).
Refuses to test.
Has no idea what results mean.

I would be grateful if you would look into this and reply.

Regards


Possibly helpful images.
Last known Stats for Sheffield TMAU testing : 2011

get New Posts by EMAIL : Enter your email address :



A EURORDIS and NORD Member Organization

0 comments:

Post a Comment