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Blog Archive

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/
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.


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Saturday, February 10, 2018

UBIOME 10% discount using MEBO promo code.

get MEBO 10% discount
UBIOME 10% Discount.
GUT EXPLORER (SINGLE PURCHASE) : $89
link : Ubiome gut explorer page

in checkout, use promotion code :
MEBO
or ... mebo

Discount should apply internationally also.
Purchase should give $8.90 discount.
Cost should be $80.10

News 1/2
MEBO has arranged for a 10% discount for the UBIOME GUT EXPLORER (single purchase) service.
This is a good way of getting an idea of the current state of your gut microbiome.

News 2/2
This means you can send your details to the current study Danny is doing as well if you want, once you get your results.
Link : About Danny's citizen science study

More details to follow ...

choose this kit
Notes :
Does not apply to :
Smartgut.
Gut Explorer subscription (not recommended anyhow).
5 site test.

Around January 2018 Ubiome DISABLED much of the data in GUT EXPLORER compared to SMARTGUT, including raw download, but this data now seems to be restored. So both are as good as each other for information yielded.

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Friday, February 9, 2018

MEBO Annual Conference & Meetup, APR 13-16th


MEBO will be holding this year’s annual conference on Saturday, April 14th, and the meetup throughout the weekend in beautiful Savannah, Georgia. The location of the conference is yet to be announced. Many of us will be staying at the Fairfield Marriott on Abercorn Street off I-95 South.

The address is:

Fairfield Inn & Suites
By Marriott
17027 Abercorn St
Savannah, Ga 31419
912 925-5050

Location of the conference and possible other accommodations to be announced.

As the conference agenda is being drawn up, the theme of this event will be “Research”. The precise agenda is pending as we wait for the All of Us determination of whether NIH funding will be awarded for the research proposal, “Could Precision Medicine Initiative Reduce Social Inequality”, put forth by MEBO’s Scientific Director, Irene Gabashvili, PhD. If it is approved, supplies volunteer participants may need will hopefully be available to give out during the conference. Please let All of Us know you support this research award by clicking here to vote. Your vote could actually make a difference of whether we are granted this NIH research support.

Some of the topics to be discussed in the conference will be the following:

1. Preliminary results of MEBO's Clinical Trials by Irene Gabashvili, MEBO's Scientific Director


Preliminary results of the following two MEBO Clinical Trials:

NCT02683876 - Completed
Exploratory Study of Relationships Between Malodor and Urine Metabolomics
Canada and United States 2016 - ongoing

NCT02692495 - Completed
Evaluation of Potential Screening Tools for Metabolic Body Odor and Halitosis
United Kingdom 2009 - 2012

2. Preliminary results of Citizen Research Group from Germany results

We will also be discussing the preliminary results shared with us by Danny Kunz and his research group in Germany, who have asked MEBO for volunteers to participate in their gut microbiome research. Ongoing discussion on their research can be found in their blog, Body Odor Research Blog.

3. More information about the All of Us research application put forth by MEBO’s Scientific Director, Irene Gabashvili, PhD.

Could Precision Medicine Initiative Reduce Social Inequality”, Below is a brief description of the study Irene is applying for:
  1. Urinary ‘biome’: 16S
  2. Bacterial DNA
  3. Virome
  4. Metabalome
  5. Gut, skin and oral microbiome could also be helpful, at least in some cases
METHOD:
  • Whole Exomic Sequencing (WES): At specific time anchored to the clinical event
  • Diet: Food diary
  • Perceived outcomes – patient: Natural language processing of notes
  • Perceived outcomes – surgeon.

If you have not voted and commented yet expressing your support for funding consideration by the National Institutes of Health, All of Us initiative, please do so now at this site. You can do so anonymously. To vote, click here.

4. Provide research/test kits (pending research approval)


MEBO has been working with some labs in an effort to launch testing research possibilities. This is still a work in progress that I hope will be in place in time for the conference, but it is not yet guaranteed.

More information to follow to be announced in this blog about the MEBO Conference agenda. Please stay tuned.

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
www.mebo.com.br/
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