4 ms·

Rare Sharing of Data Leads to Progress on Alzheimer’s

50 points by robg 16y ago

RiderOfGiraffes 16y ago
Single page: http://www.nytimes.com/2010/08/13/health/research/13alzheimer.html?_r=2&hp=&pagewanted=all http://www.nytimes.com/2010/08/13/health/research/13alzheime...
nickpinkston 16y ago
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?
- peteforde 16y ago
  I don't want to repeat myself, but see my comment for links. http://news.ycombinator.com/item?id=1600965 http://news.ycombinator.com/item?id=1600965
  - nickpinkston 16y ago
    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.
    - peteforde 16y ago
      I'm afraid that it's mostly just a human tendency to embrace "the way things are/should/will always be". Tradition over ambition!
nolite 16y ago
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://alois.med.upenn.edu/niagads/how_access1.htm http://bit.ly/dgbmmk http://bit.ly/dgbmmk
- th0ma5 16y ago
  I'm always wanting really open data, but it seems that the people that have this a) aren't really as data-savvy as the rest of us with regards to actually supporting what openness would mean b) kinda want to know how it is being used in case you come up with something interesting or c) they do such domain-specific stuff that'd you'd almost have to be in the field full time to really get a hang for what it all means and what the common tools are.
- zoudini 16y ago
  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.aspx http://www.adni-info.org/Scientists/LinksForDataCollection.a...) 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.
c1sc0 16y ago
This kind of news makes me wonder if maybe we should just give up completely on patient privacy & by default just share everything.
- peteforde 16y ago
  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/ 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_brother_inspired.html http://www.ted.com/talks/jamie_heywood_the_big_idea_my_broth... Really inspiring stuff, because I assure you that the folks participating in these programs do not consider themselves hackers OR radicals.
  - michael_nielsen 16y ago
    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/ 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/ 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 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 http://oad.simmons.edu/oadwiki/Timeline Another interesting step is the Federal Research Public Access (http://www.arl.org/sparc/publications/articles/FRPAA-introduced-US-House-of-Representatives.shtml http://www.arl.org/sparc/publications/articles/FRPAA-introdu... ), 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.
  - nickpinkston 16y ago
bokchoi 16y ago
The Gates Foundation writes into their AIDS grant that researchers must share their data: http://online.wsj.com/article/SB115335816005811923.html 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%20Studies/Weiss-VDC/Weiss_McKnight_plasma/begin.view https://atlas.scharp.org/cpas/project/VISC/Completed%20CAVD%...?

50 points by robg 16y ago

Single page: http://www.nytimes.com/2010/08/13/health/research/13alzheimer.html?_r=2&hp=&pagewanted=all http://www.nytimes.com/2010/08/13/health/research/13alzheime...

nickpinkston 16y ago

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?

peteforde 16y ago
I don't want to repeat myself, but see my comment for links. http://news.ycombinator.com/item?id=1600965 http://news.ycombinator.com/item?id=1600965
- nickpinkston 16y ago
  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.
  - peteforde 16y ago
    I'm afraid that it's mostly just a human tendency to embrace "the way things are/should/will always be". Tradition over ambition!

nolite 16y ago

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://alois.med.upenn.edu/niagads/how_access1.htm http://bit.ly/dgbmmk http://bit.ly/dgbmmk

th0ma5 16y ago
I'm always wanting really open data, but it seems that the people that have this a) aren't really as data-savvy as the rest of us with regards to actually supporting what openness would mean b) kinda want to know how it is being used in case you come up with something interesting or c) they do such domain-specific stuff that'd you'd almost have to be in the field full time to really get a hang for what it all means and what the common tools are.
zoudini 16y ago
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.aspx http://www.adni-info.org/Scientists/LinksForDataCollection.a...) 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.

c1sc0 16y ago

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

peteforde 16y ago
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/ 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_brother_inspired.html http://www.ted.com/talks/jamie_heywood_the_big_idea_my_broth... Really inspiring stuff, because I assure you that the folks participating in these programs do not consider themselves hackers OR radicals.
- michael_nielsen 16y ago
  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/ 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/ 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 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 http://oad.simmons.edu/oadwiki/Timeline Another interesting step is the Federal Research Public Access (http://www.arl.org/sparc/publications/articles/FRPAA-introduced-US-House-of-Representatives.shtml http://www.arl.org/sparc/publications/articles/FRPAA-introdu... ), 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.
- nickpinkston 16y ago

bokchoi 16y ago

The Gates Foundation writes into their AIDS grant that researchers must share their data: http://online.wsj.com/article/SB115335816005811923.html 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%20Studies/Weiss-VDC/Weiss_McKnight_plasma/begin.view https://atlas.scharp.org/cpas/project/VISC/Completed%20CAVD%...?