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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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or contact
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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
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RESEARCH DETAILS

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$ 568.00/USD

TOTAL at today's ROE
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£1,398.07 = $1,745.14

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Tuesday, February 13, 2018

All of Us - Aims to be ALL INCLUSIVE



In your comments when you vote for Irene's proposal, strive to explain how well our community meets their racial, ethnic, socio-economic status, urban/rural diversity goals, as well as us being very much an under-researched group.
As mentioned in a post I made 3 weeks ago in this blog, "Support 'All of US' Research Program Proposal", this NIH funded program aims to be all inclusive, providing research opportunities to persons in need who otherwise would probably never have that opportunity,

In this interview with the Washington Post Live, Sep 26, 2017, NIH Director, Francis Collins, talks about the 'All of Us' Research Program, in which he describes it in greater detail, stressing the importance of participant consent, privacy, longevity of the studies involved, and to be all inclusive of ethinic, racial, socio-economic status, and rural/urban representation. He states the following:

it will include one million Americans as full participants in a long-term study of health and disease...

This is one of the boldest undertaking that NIH has tried to design and implement...it will include one million Americans as full participants in a long-term study of health and disease...These will be participants, partners in an effort. They will get a lot of information back about themselves, that may be quite interesting, and somewhat useful in terms of their own medical care...

Currently this year (2017), we're spending about 300 million dollars on getting this all up and going; and then it's a program that's going to be going on for many years...

There are 10 health provider organizations across the country that are involved in this, and are funded to take part in it...They then reach out to their participants and invite them to join up. Very careful consent process is involved in that."

We also want to make this available to anybody in the United States, so there will be a direct volunteer opportunity for people to sign up...We want to enroll many people who have not traditionally been part of medical research. In fact, we'd like more than half of the one million participants to be that part of under-represented group, which is pretty bold... (these are) racial and ethnic minorities, socio-economic status, people who might not necessarily have been engaged in research, rural participants who often times don't get touched by medical research opportunities. All of that together, (we want to) look at those various groups because we want lots of those folks because we want to understand health disparities as well.

The 'All of Us' program aims to have in its team members the same diversity that it has in its participants...

We've already enrolled a few thousand people...there's a biobank at the Mayo Clinic that's prepared to take 32 million samples and store them in a carefully barcoded way... There's a database plan and a security system as best as the world can provide because we want to be sure that this kind of this kind of system is not subject to hacking...But we want to launch when it's ready and right, and we don't want to rush if there are any concerns that the Beta Test is telling us that we have some work to do.
Francis Collins
NIH Director
Washington Post Live
26 SEP 2017

Please let the 'All of Us' team know that you would like the proposal to research our community, submitted by the MEBO Scientific Director, Irene Gabashvili, PhD, will be included in the 'All of Us' Research Program. If Irene's proposal of our community to participate is accepted, as Francis Collins states, "it's a program that's going to be going on for many years." We need to have a research program that will be funded beyond the initial phase - something that has proven to be impossible for our scientists until now!

Please vote and give comments to 'All of Us' in Irene's proposal. You can do this anonymously after you register in the site. In your comments when you vote for Irene's proposal, strive to explain how well our community meets their racial, ethnic, socio-economic status, urban/rural diversity goals, as well as us being very much an under-researched group.

Your privacy is of the utmost concern for MEBO and for All of Us! Click the icon below to do so. Thank you!


Click here to vote and comment

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
www.mebo.com.br/
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A EURORDIS and NORD Member Organization

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