
Rare Sharing of Data Leads to Progress on Alzheimer’s - robg
http://www.nytimes.com/2010/08/13/health/research/13alzheimer.html?_r=1&hp
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nickpinkston
Research / IP is so broken - scientists more worried about prestige than their
field, pharma spending on vanity drugs, ad infinitum...

Does anyone have any links to progressive projects in this area?

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peteforde
I don't want to repeat myself, but see my comment for links.

<http://news.ycombinator.com/item?id=1600965>

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nickpinkston
Yea, that's exactly what I was looking for. I'm wondering what barriers are
preventing this from getting biggers? Big education? Prestige for tenure /
publish or perish? Publisher oligarchy?

I'd really like to talk to guys in this field.

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peteforde
I'm afraid that it's mostly just a human tendency to embrace "the way things
are/should/will always be".

Tradition over ambition!

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c1sc0
This kind of news makes me wonder if maybe we should just give up completely
on patient privacy & by default just share _everything_.

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peteforde
Michael Nielsen is working on a new book called "Reinventing Discovery" which
I very much hope is a step in this direction.

<http://michaelnielsen.org/blog/michael-a-nielsen/>

At any rate, the folks on PatientsLikeMe.com are sharing, and they have
results to show for it:

[http://www.ted.com/talks/jamie_heywood_the_big_idea_my_broth...](http://www.ted.com/talks/jamie_heywood_the_big_idea_my_brother_inspired.html)

Really inspiring stuff, because I assure you that the folks participating in
these programs do not consider themselves hackers OR radicals.

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michael_nielsen
Thanks for the shout out, Pete. A few bits and pieces:

Creative Commons has started an organization called Science Commons that has
done some great work on getting scientists to share their data:

<http://sciencecommons.org/>

A promising step in this direction is Sage Bionetworks, which is attempting to
use an open source style approach to drug development:

<http://www.sagebase.org/>

There are some very well known people behind Sage, and it's received backing
from Merck (and Science Commons), among others. See, e.g.,
<http://creativecommons.org/weblog/entry/19646>, which states that Merck has
backed them to the tune of 150 million dollars. At the moment they're just
getting off the ground.

A much broader overview on open data and related issues can be found in Peter
Suber's open access timeline: <http://oad.simmons.edu/oadwiki/Timeline>

Another interesting step is the Federal Research Public Access
([http://www.arl.org/sparc/publications/articles/FRPAA-
introdu...](http://www.arl.org/sparc/publications/articles/FRPAA-introduced-
US-House-of-Representatives.shtml) ), which would make most US-government
sponsored research publicly available. It's not quite the same as open data,
but is very consonant with it.

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bokchoi
The Gates Foundation writes into their AIDS grant that researchers must share
their data:

<http://online.wsj.com/article/SB115335816005811923.html>

My company helps the labs and researchers share their data using a portal
website geared toward researchers and labs. Here is some of the data they've
shared (chosen at random):

[https://atlas.scharp.org/cpas/project/VISC/Completed%20CAVD%...](https://atlas.scharp.org/cpas/project/VISC/Completed%20CAVD%20Studies/Weiss-
VDC/Weiss_McKnight_plasma/begin.view)?

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nolite
Is the dataset something that anyone can access and download or do we need to
be associated with one of the mentioned companies/research groups?

Edit: Looks like we can't exactly just hack on this in our basement

<http://alois.med.upenn.edu/niagads/how_access1.htm>

<http://bit.ly/dgbmmk>

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zoudini
From my understanding of the article, the research they're referring to has to
do with biomarkers (which aren't always genetic) and brain scans. If you go to
the ADNI site (link: [http://www.adni-
info.org/Scientists/LinksForDataCollection.a...](http://www.adni-
info.org/Scientists/LinksForDataCollection.aspx)) you'll see that it is indeed
possible to download some anonymized data and scans with less stringent
approval. So, maybe basement hacks are indeed possible.

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RiderOfGiraffes
Single page:

[http://www.nytimes.com/2010/08/13/health/research/13alzheime...](http://www.nytimes.com/2010/08/13/health/research/13alzheimer.html?_r=2&hp=&pagewanted=all)

