[open-science] Rare Sharing of Data Leads to Progress on Alzheimer’s (NYTimes)

Mon Aug 16 12:09:30 UTC 2010

Some of my colleagues are working with part of these data (mainly MRI
scans), and I am registered for their site as well, using the data
mainly for testing purposes.

I agree that their conditions for access to data are more open than
those of most research projects in the neuroimaging field,
but think that they are miles away from the kind of open data sharing
that is common practice in genetics or astrophysics and the goal of
OKFN.

Things are complicated by the need to balance openness of the data
with privacy of the participants in the study.

For more details, see
http://www.loni.ucla.edu/ADNI/Data/ADNI_DataUsers.shtml and follow the
"apply now" link.

Daniel

On Sun, Aug 15, 2010 at 6:13 PM, Jean-Claude Bradley
<jeanclaude.bradley at gmail.com> wrote:
> Graham - you may be thinking of my comment.  I tried to access the dataset
> but it required either registration or registration and filling out an
> application.  I don't know if this disqualifies it as truly "open" but from
> a practical standpoint I think allowing anonymous access to data and
> enabling referring via a simple URL are very important for promoting its
> use.
> Jean-Claude
>
> On Sat, Aug 14, 2010 at 3:00 PM, Graham Steel <steelgraham at hotmail.com>
> wrote:
>>
>> Peter/All,
>>
>> The issue here to me that I'd like to see more widely discussed is who
>> actually has access to such 'open data'.
>>
>> I'm 99.9% certain that I read a comment yesterday, that gaining access to
>> the data from the Alzheimer's dataset requires a log-in/approval.
>>
>> There was a similar situaion in June in terms of Pharma data from failed
>> Alzheimer's drug trials being made 'open'.
>>
>> Drug Makers Will Share Data From Failed Alzheimer's Trials - WSJ
>>
>> --
>>
>> See this thread and you'll see what i'm getting at.
>>
>> gks
>>
>>
>>
>>
>> ________________________________
>> Date: Sat, 14 Aug 2010 18:32:47 +0100
>> Subject: Re: [open-science] Rare Sharing of Data Leads to Progress on
>> Alzheimer’s (NYTimes)
>> From: pm286 at cam.ac.uk
>> To: steelgraham at hotmail.com
>> CC: open-science at lists.okfn.org
>>
>>
>>
>> On Sat, Aug 14, 2010 at 6:21 PM, Graham Steel <steelgraham at hotmail.com>
>> wrote:
>>
>> Dear All,
>>
>> As you may already know, there has been a lot of discussion on the web in
>> the last 24 hours regarding 'Rare Sharing of Data Leads to Progress on
>> Alzheimer’s (NYTimes)':-
>> http://www.nytimes.com/2010/08/13/health/research/13alzheimer.html?emc=eta1
>>
>> May I propose that this article/discussion is put on the agenda for the
>> next monthly meet up of the OKFN's Working Group on Open Data in Science.
>>
>> This is an excellent high-profile example of Open Data. Do you have
>> suggestions as to how we can take this forward.
>>
>> There is so much happening in this area now that we have to work out what
>> is the best use of our resources and how to get more people involved. Maybe
>> we shoudl use this and others as picked examples of why Open data works - a
>> sort of prospectus.
>>
>> Unfortunately not everyone will be convinced and in chemistry it's really
>> tough.
>>
>> P.
>>
>>
>> --
>> Peter Murray-Rust
>> Reader in Molecular Informatics
>> Unilever Centre, Dep. Of Chemistry
>> University of Cambridge
>> CB2 1EW, UK
>> +44-1223-763069
>>
>> _______________________________________________
>> open-science mailing list
>> open-science at lists.okfn.org
>> http://lists.okfn.org/mailman/listinfo/open-science
>>
>
>
>
> --
> Jean-Claude Bradley, Ph. D.
> E-Learning Coordinator for the College of Arts and Sciences
> Associate Professor of Chemistry
> Drexel University
>
> http://usefulchem.blogspot.com
> http://drexel-coas-elearning.blogspot.com
> http://drexel-coas-talks-mp3-podcast.blogspot.com/
> http://friendfeed.com/jcbradley
>
>
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>

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