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MEBO - UBIOME study 2018

NCT03582826
ClinicalTrials.gov
MEBO Gut Microbiome Study
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
Ubiome Gut EXPLORER : 10% OFF
Join/Watch the weekly
TMAU UP Podcasts

Videos : TMAU stories

MEBO Map Testing & Meetups


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

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Blog Archive

Monday, October 8, 2018

No longer recruiting participants MEBO Gut Microbiome Study



MEBO Research is most grateful to the hundreds of applicants who answered the pre-screening questions below in an effort to become participants in the uBiome funded MEBO Gut Microbiome Study, "Microbial Basis of Systemic Malodor and PATM Conditions (PATM)" registered with ClinicalTrials.gov.

We are no longer recruiting participants for this study
All 100 applicants from around the world have been selected and have received their kits for sample collection. We are no longer recruiting participants for this study, though anyone interested in being considered for future research and/or testing participation opportunities with MEBO may send me a private email with the answers to the questions  (click on icon below) to be placed in the MEBO Master Database. Answers to the questions may be sent to maria.delatorre@meboresearch.org .

Click on icon for questions


The following is a timeline of this research study:

May 8, 2018

MEBO awarded a study grant from UBIOME


June 10, 2018
Fundraiser to support international shipments to participants (Customs fees, return shipping cost)

Donations "Gut Microbiota in Idiopathic Malodor Production" Research



June 27, 2018

Q&A RE: MEBO Gut Microbiome Study funded by a uBiome Grant


July 2, 2018

Consent, Procedure & Life Quality Test Forms MEBO Microbiome Study


Much gratitude goes to all who applied to participate in any and all MEBO test and/or research program.

María


María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)


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Wednesday, September 26, 2018

TMAU and MTO Test in Holland

Holland has a lab that tests for TMAU (urine and DNA),
and also last year started a test for :

SELENBP1 gene (DNA test)
Urine test for 2 or 3 volatiles (not known yet). Seems to be METHANETHIOL and DIMETHYLSULFIDE and possibly others.

MEBO Mental Health Director Crissan has been in touch with the lab, and got these details about their metabolic malodor tests.

Crissan writes : 

The following information was provided by the head of the genome lab at
Radboud UMC:

The good news is that the lab does offer the Trimethylaminuria and
malodour test. Both tests are available for local and international
patients. The TMAU test (genetic and urine) can be ordered online. The
malodour syndromes test (urine and plasma) through a form.

In addition:

- The lab has verified that a referral from a physician is always
necessary.
- Payment should be completed beforehand, the physician will receive an
invoice with instructions and the patient has to complete the payment
before the test can be processed. - It will vary per country and
insurance policies if the expenses are covered or not.
- Patients should get all of the information about the tests from their
referring physicians. This includes all questions with regards to test,
instructions, sending materials and the test results.

- Herewith the lab contact information. ( patients can provide their
physician with this information):

Postal address:
Radboudumc
Genome Diagnostics, route 815
Head laboratory: Dr. H. Yntema
Postbus 9101
6500 HB Nijmegen
The Netherlands
Tel: +31(0)24 3613799
Fax: +31(0)24 3616658
email : gen@radboudumc.nl
https://order.radboudumc.nl/en/genetics


- It's advisable that the physician consult other physicians/ metabolic
specialist with knowledge of TMAU if they have questions with regards to
test, interpretations of the results etc. The laboratory will not be
able to provide any information with regards to these matters.

Herewith the test instructions mentioned in the Request form (see
attachment), these corresponds with the test instructions I have also
received.

I Fish odour syndrome or trimethylaminuria diagnosis
Deficiency of the Flavin-containing Mono-Oxygenase 3 (=FMO₃) is
responsible for fish odour syndrome or trimethylaminuria (OMIM 602079).
First line
diagnostics is the mutation analysis of the FMO₃ gene (requires
uncentrifuged EDTA blood or isolated DNA). In case of variants of
unknown significance
in the FMO₃ gene we will advise second line testing using a fish meal
loading test (a fish meal with preferably 300 grams of fresh fish). In
the pre- and
post load urine samples we measure trimethylamine (TMA) and the ratio
TMA/TMAO using NMR spectroscopy.

NMR spectroscopy also will confirm or exclude dimethylglycine
dehydrogenase deficiency as a cause of a fish like malodour.
We prefer to obtain two samples:
1. Urine (>2ml) on normal diet (=pre-load sample)
2. Urine collected during 12 hours after a fish meal with preferably 300
grams of fresh fish. From this volume >2ml should be sent frozen on dry
ice (=post-load sample).

II Other malodour syndromes
For other non-fish like malodour syndromes we advise NMR spectroscopy of
urine and heparinised plasma (2 ml of each to be sent frozen on dry
ice).

For DNA analysis:
EDTA 5 ml – do not centrifuge
EDTA plasma for DNA analysis (or isolated DNA) can be sent at room
temperature to Radboudumc, Laboratory for Diagnostics, PO Box 9101,
Internal Post 815, 6500
HB, Nijmegen, The Netherlands and to the attention of the Translational
Metabolic Laboratory.

Urine and heparinized plasma for NMR analysis should be sent well-capped
and frozen on sufficient dry ice to Radboudumc, Laboratory for
Diagnostics, PO Box 9101,
Internal Post 815, 6500 HB, Nijmegen, The Netherlands and to the
attention of the Translational Metabolic Laboratory.
For NMR spectroscopy minimal volumes required are:
- Urine; 1 ml
- Heparinized plasma or serum; 1 ml
- Cerebrospinal fluid; 1 ml

Herewith all of the links:

Request form Trimethylaminuria and Malodour syndromes:
https://issuu.com/radboudumc/docs/request_form_nmr_body_fluid?e=28355229/47517668

Link to order the test online (physician has to do this):
https://order.radboudumc.nl/en/products/conditions/metabolic-disorders/trimethylaminuria

The malodour test can't be ordered online, so I suggest patients to ask
their physician to fill out the request form, if they specifically want
this test or a combination of TMAU and malodour test. (see attachment).

-  Fill out Request form Malodour syndrome and select option II other
malodour syndromes

Turnaround times are mentioned in the table.

link:
https://order.radboudumc.nl/RadboudEAS/media/EAS/EASBlancoENGNijmegen_versie_09-2018.pdf

Prices:

- Trimethylaminuria test 400 Euro's, approximately 480 USD
- Malodour syndromes test 327 Euro's, approximately 381 USD

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A EURORDIS and NORD Member Organization

Monday, September 24, 2018

uBiome Expands Product Portfolio, Drug Discovery & Development

uBiome Announces $83 Million Series C Financing


uBiome Will Expand World’s Largest Human Microbiome Database 
and Advance Product Portfolio, 
Including Drug Discovery & Development
September 21, 2018

Considered to be "the leader in microbial genomics", uBiome announces that it has received $83 Million Series C Financing to expand its world's largest human microbiome database, advance product portfolio, drug discovery & development.

Proceeds of the financing will be used to:
  • Enhance and expand the Company’s product portfolio
  • Leverage insights gained by building largest microbiome database to expand into drug research and development using pre-existing patent assets and industry research collaborations, not data sales
  • Accelerate and expand commercialization of SmartGut, SmartJane, Explorer and other clinical tests under development, including companion diagnostics
  • Begin commercialization of biopharma molecules and live biotherapeutics based on mining of existing IP

uBiome has partnered with more than 200 research institutions around the world, including the US Centers for Disease Control (CDC), US National Institutes of Health (NIH), Harvard University, Stanford University, University of California, San Francisco, the Massachusetts Institute of Technology, Oxford University, and the University of Sydney.

MEBO is currently participating in the uBiome's database expansion. It is our hope, though not a guarantee...that this clinical trial will ultimately lead to drug discovery & development.
With a uBiome Research Grant sponsoring MEBO's Clinical Trial, NCT02683876, "Microbial Basis of Systemic Malodor and PATM Conditions", MEBO is currently participating in the uBiome's database expansion. It is our hope, though not a guarantee, as stated in MEBO's Research Consent Form, that this clinical trial will ultimately lead to drug discovery & development.

The international MEBO community is most grateful to uBiome for the research grant it has awarded us for our Clinical Trial. We look forward to uBiome's expansion of its advanced product portfolio and drug discovery and development, which we hope will help our community arrive at proper diagnoses and targeted, personalized treatment protocols moving forward.

María


María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)


SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.

get New Posts by EMAIL : Enter your email address :



A EURORDIS and NORD Member Organization