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  #1  
Old 08-28-2018, 07:26 AM
talulahgosh talulahgosh is offline
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Join Date: Aug 2018
Location: Pittsburgh, PA
Posts: 2
Default STUDY: All of Us

This study is for anyone, but I thought MS needs some representatives, too.
https://www.joinallofus.org/en
Everything is anonymous, and you get to see the data via updates, a great way to bond with your partner on rainy days! Well, if you nerd like I do, that is.
This project is actually world-wide, which is hella cool. DNA sequencing is so cheap now; I remember when you were lucky to get 300 base pairs read.
Wow, I'm old.
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  #2  
Old 09-02-2018, 05:52 PM
Suebee Suebee is offline
MS Gladiator
 
Join Date: Mar 2015
Location: Houston, TX
Posts: 413
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Thanks for posting this site. I want science to make advances to stop MS! I think looking at metadata is one way to do this But I strongly believe we should be well informed as to exactly how are very private health data may be used and is protected.

This group is funded by a federal grant, I presume, and lists its privacy statement is here

https://www.joinallofus.org/en/privacy-policy

I get concerned when a research group/platform can connect personal identifying info with health data and makes statements like this:
"We may transfer your data to countries where you do not live. These countries may have different laws about protecting data than the country where you live."

And says that it shares info with "participants" and participants are identified as HMOs. What if pre-existing conditions becomes an issue?

I'm just saying be sure you understand how your data is going to be used before you give it out.
Advocate for yourself. Stop MS.
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  #3  
Old 09-03-2018, 06:12 AM
talulahgosh talulahgosh is offline
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Join Date: Aug 2018
Location: Pittsburgh, PA
Posts: 2
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I understand your concerns, but I hope you get involved. This project is going to change lives!!
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dna sequencing, genetics, study

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