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anti-TMA pill in a year or 2 ? (scroll 12 mins)

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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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TMAU (Dominican)
Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


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Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Thursday, November 7, 2019

FMO3 Gene Test 'liberation day' is here

want to FMO3 gene test ?
Do a Consumer Full Genome Test.
It's cheaper than a single gene test 

About :
FMO3 gene test. Easily doing this test without need for Dr.

It looks like FMO3 Gene Test 'liberation day' has finally arrived, in the form of INEXPENSIVE FULL GENOME tests for CONSUMERS. (labs such as Dante labs or Nebula Genomics).

MEBO tried to source a FMO3 gene test supplier for over 10 years without success.
The hurdles were :

1. Laws (meant to 'protect' the tester, but actually work against them ... e.g. Dr must order)
2. Cost (clinical labs still charge around $600 for the FMO3 gene test)
3. public-unfriendly service : (e.g. used blood rather than spit, public were a nuisance)
4. Didn't give raw data to tester (gives their 'interpretation only)

CONSUMER DNA tests were on the horizon over the last decade, but none fully fitted the criteria to get the FMO3 test criteria :
Reasons :
1. Full Genome test was too expensive, maybe $1000+
2. 23andme showed the way in consumer service, but don't test all the 'points' (not full genome)

Thankfully CONSUMER GENOME testing has now reached a point where it can be suggested as the FMO3 GENE TEST

1. It's now inexpensive , maybe from $150 (low pass ... x0.4 to x4 ?, but probably acceptable ?) to $400 (clinical standard ... x30)
2. Logistics are designed for the tester, (e.g. spit test, consumer test, easy, no Dr Obstacle).
3. Get the full genome and not just a SINGLE GENE. Single gene testing now seems obsolete, as you can do a full genome test instead, which will probably be cheaper.
3. Can check results online, download raw data etc.

Examples of labs offering Consumer Full Genome testing : 
Dante labs (x4 coverage for $149 ?)
Nebula Genomics (x0.4 coverage for $149 ?)
There are others.

Lab Test Comparison Site
(not verified by MEBO)
(may not include all consumer supplier options)

COVERAGE
Coverage is how many times the lab read your code.
It seems they can make small errors in reading, which might be a lot in such a lot of data.
x4 is around 99% confidence ?
x30 is 99.9% confidence ?

Nebula cheapest is 0.4% coverage, which may mean its not FGT, but still a lot more 'points' than 23andme.
Dante cheapest is x4 coverage.
x30 coverage is traditionally regarded as 'clinical standard'.

MEBO can't recommend a test lab supplier (yet)
As we have no feedback on the tests and possible 'annoyances', we can't recommend a FGT yet.
As time goes by and community give feedback, it should become clearer.
Anyone buying the tests are community 'guinea pigs'.

When you get the results, how to find FMO3 ?
With 23andme (not a full code test), you type FMO3 in a search.
Hopefully the full code test labs are the same.
If not, you may have to look around the raw data.

WARNING : you might find out you are prone to terrible disorders
All you really want is the RAW DATA.
But to make themselves distinct and look more necessary, the lab results tend to have window-dressing in the form of telling you what serious disorders you carry or will die of etc.

So the results might take the format (not literally) :
'Hi, you will get alzheimers and parkinsons ... you carry cystic fibrosis'
'where is my FMO3 result ?'
'it's in the back, you will need to rummage around.'

DATA TRANSLATORS
1.You can work out the raw data code for FMO3 yourself, but its a case of fitting a reference site to understand the data code (the AGCTs ... e.g. ACTAAGCTTAA ... for 532x3 letters ?)
2.TRANSLATORS like Promethease can 'translate' it for you, but they might ignore variants regarded 'minor' or 'benign' (currently). But should do an ok job.
Possibly the test lab sites will translate it (unlikely ?).   

INTRONS
Introns are regarded as 'junk' (the gene code is on exons), or of unknown purpose ... but sadly you can have faults here that can affect FMO3 function.
At least full genome tests give intron data too, which may be useful when more is known about them.

FINAL POINT :
if you want to know your FMO3 gene 532 full code (plus introns), the best way is to do an inexpensive Consumer Full Genome Test such as Dante labs.
and search FMO3 (if its possible) ... or check the raw data and work it out yourself ... or upload to a DNA data translator.

We no longer need Drs or 'official' Health System DNA labs,.
We can test from home and read the results online.
Once we hear feedback from testers we will find out the obstacles, what lab is best, or whether it is good enough to be regarded as the best FMO3 Gene Test.

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4 comments:

bohémien said...

The dantelabes looks inexpensive and ship worldwide and also free shipping as long as I want to do a genitec test I'm looking forward to hear from anyone will try it I wish I can be the first one who will do that test but I just can't at this moment

Nov 7, 2019, 8:45:00 PM
Unknown said...

I have done the 23 and me but have no clue how to translate what they have down for me from the results for fmo3

Nov 8, 2019, 12:08:00 AM
blogcontributor2 said...

on 23andme site ,search FMO3.
it should give results for about 56 'points'.
About 23 of these are coding points (probably the most common variant points).

To interpret them :
you could email MEBO and I will try.
or
upload to a data interpreter such as promethease ($12?).
theres probably free ones out there.

Nov 8, 2019, 12:28:00 AM
Anonymous said...

I think that Dante Labs does not have very good reviews ... I doubt that for that price they will do a good job.

Nov 8, 2019, 1:42:00 AM
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