NIH: All of Us Research Program

Andy

Andy

Retired committee member
What Is the All of Us Research Program?
All of Us is a new research program from the National Institutes of Health (NIH). The goal is to advance precision medicine. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

To get there, we need one million or more people. Those who join will share information about their health over time. Researchers will study this data. What they learn could improve health for generations to come. Participants are our partners. We’ll share information back with them over time.
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http://www.joinallofus.org/together
 
Jupiter said:
Is this only for People in the US?
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There doesn't appear to be any details yet. No registration form. Seems like just announcing the project. It mentions possible bio samples so probably US only, if it happens at all. We've been hearing about patient engagement for years, still an empty promise. Possible feel-good fluff (my cynicism is a bit high right now...).
 
This does not seem to be dedicated to ME/CFS patients in particular. I dont want to sound sceptical but why would I give out samples for an unknown cause? It is as bad as giving out your social security number or credit card information to strangers or signing a contract you have never read.
 
Dudden said:
This does not seem to be dedicated to ME/CFS patients in particular. I dont want to sound sceptical but why would I give out samples for an unknown cause? It is as bad as giving out your social security number or credit card information to strangers or signing a contract you have never read.
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It seems to be about identifying gaps in medical care in a generic sense. It's a good idea in principle.

But then given what the NIH does about gaps it already knows about, no good reason to be optimistic. Those things tend to be exercises in confirmation bias, where interpretation of the results is highly cherry-picked according to what the stakeholders want to be true.
 
rvallee said:
But then given what the NIH does about gaps it already knows about,
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+1

I think they erroneously think they can fix that simply with a lot of Big Data, but that’s only one piece—and doesn’t fix the process problems that exist at NIH.

Also, it will take a long time and there are pressing needs now.

Also, big data is only as good as the programmers. More information can reduce bias but programming can amplify bias, too. Hopefully they’re actively trying to reduce it.

That being said it’s a possible way to generate data on morbidity and mortality in ME (even though I doubt they measure anything relevant to ME itself).
 
Huge US government study to offer genetic counselling

A US government study that aims to sequence the genomes of one million volunteers will partner with a genetic-counselling company to help participants understand their results. It will be the largest US government study to provide such a service.

The National Institutes of Health (NIH) is leading the project, called All of Us. And on 21 August, the agency announced the award of a US$4.6-million, 5-year grant to Color.

The firm, in Burlingame, California, will counsel every study participant with a genetic variant that could have serious health implications — such as BRCA mutations associated with breast cancer — when they receive their results. Color will also develop educational materials for all study participants, and will offer telephone consultations to anyone who wishes to discuss their results with a counsellor.
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https://www.nature.com/articles/d41586-019-02509-4
 
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