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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

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at UK Findacure conf 2020

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MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

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BO Sufferers Podcasts



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

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
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NORD Member Organization
See RareConnect TMAU

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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

Saturday, April 17, 2021

Messina Lab Sicily wants FMO3 results

Sidoti Lab
Medical Genetics clinic
Messina University Hospital, Sicily Italy

The Sidoti Lab in Messina has taken an interest in TMAU and FMO3 over the last few years.
They have done a few TMAU/FMO3 papers, and look to be continuing.

They request you send your FMO3 / TMAU result to them.

After contacting them, it seems they are interested in FMO3/TMAU results data.
They request you send such data if you wish.
At this initial stage, it's unclear what exact data.
Perhaps a best option is to contact them and ask.

Sidoti Lab Messina TMAU contact email :  

It is possible that this lab is the best hope for TMAU/FMO3 people currently.
They also TMAU test, as well as publish papers.

The website is in Italian.
Chrome Browser gives an option to translate to other languages. 

Some quotes from Sidoti Lab Messina

"Our lab performs the TMAU genetic test even for patients who do not live in Italy. The test is free because it is carried out with research fund money contributions, especially for patients who cannot pay or for any other reasons. Therefore we cannot release an official report, but we will be able to let you know if you have TMAU or not, in a mild or severe form"

"We would like to receive the results of other patients. The more data we can analyse the better it is!"

"We can accept both kind of data Whole genome and clinical FMO3 tests of each patient."

"regarding the patient's results we prefer Whole genome raw data (FASTQ is better, when avalaible; otherwise the BAM file could be useful for us but, in this case, we also need the exact reference genome -eg. Hg19 or Hg38- used for mapping)."

"If it will not be possible, The Clinical FMO3 tests (we suppose you refer to a list of FMO3 variants) could be also suitable for our analysis."

"Anyway, how many patients are you speaking about?"

Quotes from the Sidoti Lab Messina website :

This site is managed by a group of researchers from the University of Messina that deals with research, diagnosis, genetics and therapy of Trimethylaminuria ( TMAU ).

The operational core of our team consists of:

Prof.  Antonina SIDOTI , prof. associate of Biology and Genetics (BIO / 13) and head of the "Molecular Genetics" laboratory at the University of Messina, biologist executive of the "Medical Genetics" service of the Messina Polyclinic, deputy scientific director of the Euro Institute -Mediterraneo di Scienza e Tecnologia (IEMEST) of Palermo, of which he is also director of the department of “Biomolecular strategies, genetics and cutting-edge therapies”;
Dr.  Rosalia D'ANGELO , researcher at the "Molecular Genetics" laboratory of the University of Messina, biologist executive of the "Medical Genetics" service of the Messina Polyclinic Company;
Dr.  Carmela RINALDI , researcher at the "Molecular Genetics" laboratory of the University of Messina, biologist executive of the "Microbiology" service of the Messina Polyclinic Company;
Dr. Luigi DONATO , researcher at the Euro-Mediterranean Institute of Science and Technology (IEMEST) in Palermo, biologist and PhD in “Applied Biology and Experimental Medicine”; 
Dr.  Concetta SCIMONE , researcher at the Euro-Mediterranean Institute of Science and Technology (IEMEST) in Palermo, biotechnologist and PhD in “Biology and Cell Biotechnology”, as well as a specialist in “Medical Genetics”.
Dr.  Simona  ALIBRANDI , PhD Student in "Applied Biology and Experimental Medicine".
Prof.  Herbert Ryan MARINI , Aggregate Professor of Applied Dietetic Technical Sciences, SSD MED / 49, SC 06 / D2 - Endocrinology, Nephrology and Nutrition and Wellness Sciences, of the Department of Clinical and Experimental Medicine, at the University of Messina, and Equivalent Medical Director, UOC of Internal Medicine, DAI of Medical Sciences, AOU Policlinico “G. Martino ", Messina.
Prof.  Salvatore SETTINERI , associate professor of Clinical Psychology in the BIOMORF Department of the University of Messina.
Prof.  Maria Rosaria Anna MUSCATELLO , at the Clinical Psychology Unit of the Department of Biomedical, Dental and Morphological and Functional Imaging Sciences of the University of Messina, UOC of Psychiatry, AOU of G. Martino, Messina. 

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Anonymous said...

I went ahead and sent them my FASTQ file.

Apr 17, 2021, 4:27:00 PM
Anonymous said...

Suggestion: combine DMB with the grape ingredients and you've got almost an effective treatment.

Apr 28, 2021, 8:33:00 PM
Unknown said...

Es importante que todos los que padecemos de este terrible mal tratemos de hacernos este tipo de estudio , pero también necesitamos que nos indiquen adecuadamente como hacerlo ya que muchos de nosotros no contamos con los conocimientos necesarios

May 19, 2021, 6:28:00 AM
blogcontributor2 said...

you are right. unfortunately they do not speak english very well, and also we are having to fit into their plans and structures.

maybe if people keep emailing them to try and get them to be public-friendly and a useful outcome, that might help.

May 19, 2021, 6:38:00 AM
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