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
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."
The lab in Canada that MEBO Research has contracted to perform our International Test Program, Eliapharma Services, Inc., has been working on analyzing the TMA levels, TMAO levels, and creatinine of the 38 samples of 9.9mL urine and 0.1mL HCl that were immediately frozen after collection and expediently shipped to the lab using International Priority Shipping.
Painstaking efforts have been put forth to ensure that a professional service is rendered to our community in multiple areas, the international shipping process, the kit and collection process, and the analysis of specimen.
The CEO of this lab, Samir Nassr, takes much pride in his work, since he is a perfectionist, as scientists should be. At the onset of this program, he purchased trimethylamine (TMA) from a chemical company in order to use it to calibrate the LC-MS/MS Bioanalysis equipment for this test. Even so, when he began working with the 38 urine samples, he initially began doing a trial run with actual live urine specimens in lieu of the TMA provided by the chemical company to validate the analytical methods. He was somewhat satisfied with the reading for the TMA and TMAO levels, but wanted to “fine tune” the calibration for the creatinine. He has repeated some of the tests yet again to ensure perfect accuracy.
I must add that I feel very secure with his professionalism, as he is the owner of this lab and takes pride in his work. Samir assures us that once he is satisfied with the validation process and results, future analysis will be performed much more quickly. We expect the frequency of analyzing batches of specimen to also be much more frequent, depending on how quickly we can get a batch of 30 samples. At the rate we are getting them at the onset of MEBO’s International Program, it could be once a month, and hopefully eventually every 2 to 4 weeks.
Painstaking efforts have been put forth to ensure that a professional service is rendered to our community in multiple areas, the international shipping process, the kit and collection process, and the analysis of specimen. We do appreciate that it has taken some time to do so, and truly appreciate the patience of everyone involved. We do tend to be a time-sensitive society, and the urgency of getting results to have answers is of the utmost importance to the individuals involved. However, accuracy and a seamless and professionally operated process are even more important to ensure that sufferers are getting accurate results and real answers to their odor problems. Therefore, we are now working not only on providing accurate results, but also on putting a professional presentation explaining TMAU and its management protocol for the physicians of those persons who get a positive result.
We are currently still working on these results to provide them as soon as they are ready. You patience is greatly appreciated as we diligently strive to help those participating in this program get accurate answers as well as the proper information to assist in communications with the respective physicians.
Our next shipment of kits is going to go around the globe to countries as far as Australia, Continental Europe, and the Americas. We are looking forward to initiating our new dealings with these and other Customs Agencies from around the world, as much meticulous preparation has been put forth to ensure a smooth process.
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MEBO will get 0.5%
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TOTAL DONATIONS: $267.48 = £159.47 (30AUG14) 1st shipment to Kenya 3JUN14 $92.75/USD 2nd shipment to Ghana 15AUG14 $104.56/USD 3rd shipment to Kenya 19SEP14 $95.51/USD DONATIONS 2017: £5.00 (3MAR17)
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