[Rdap] data repository assistance please

Thu Apr 27 16:09:19 EDT 2017

Hi Daureen,

Not that it may be of help persuading the researcher to use ICPSR, but the
National Institute of Mental Health (NIMH) has made the STARRS-LS Data Set,
which the former director compared to the "Framingham Heart Study" of
mental health
<https://www.nimh.nih.gov/about/directors/thomas-insel/blog/2015/viewing-the-starrs-data.shtml>
available
through restricted access at ICPSR (http://www.icpsr.umich.edu/ic
psrweb/ICPSR/studies/35197. You may also want to contact NORC data enclave
at UChicago
<http://www.norc.org/Research/Capabilities/Pages/data-enclave.aspx> (
http://www.norc.org/Research/Projects/Pages/star-adult-beha
vioral-health-survey.aspx).

As Yasmeen mentioned if consent and IRB is in place for deposit in a
restricted data archive and process for vetting qualified researchers, then
there may be some interest in the Neuroinformatics Research Group at MGH
and HMS data sharing practices--they worked out some way that interested
researchers could use Dataverse at Harvard to request access to restricted
data that the group had stored in the LONI Data Archive at USC. Their
Request Access link is below and there is a video tutorial that explains
how to request access and how qualified researchers gets vetted for access,
and how the requested data gets sent to the requesters-- you may want to
reach out to the datalibs at these institutions to see how this works
exactly because it seems like in this case the researcher ends up being
gatekeeper, which as Amy points out is still sort of like "if you want my
data contact me", but just more discoverable, so again ICPSR seems more
ideal...

http://neuroinformatics.harvard.edu/gsp/get/

https://ida.loni.usc.edu/collaboration/access/appLicense.jsp
;jsessionid=4DF95AC1BFF06BDB41E308CC16184F6B

https://blogs.biomedcentral.com/bmcblog/2016/06/21/progress-
sharing-of-clinical-data/

https://www.nature.com/articles/sdata201531

Best,

Andrew

--
Andrew Creamer | Scientific Data Management
Brown University Library | Center for Digital Scholarship
234 Rockefeller Library | Providence, RI

On Thu, Apr 27, 2017 at 4:06 PM, Koshoffer, Amy (koshofae) <
KOSHOFAE at ucmail.uc.edu> wrote:

> The researcher could publish a metadata only record in their institutional
> repository that allows interested parties to find out about the existence
> of the data and contact information without sharing it.  Not quite the same
> as truly sharing.
>
> Sent from my iPhone
>
> On Apr 27, 2017, at 1:44 PM, Daureen Nesdill <daureen.nesdill at utah.edu>
> wrote:
>
> If people request the data ICPSR will require them to go through IRB and
> pay ICPSR a fee.
>
> The researcher indicated that having users pay the fee means it is not
> open access. I do not entirely agree.
>
>
>
> Daureen
>
>
>
> *From:* Rdap [mailto:rdap-bounces at asis.org <rdap-bounces at asis.org>] *On
> Behalf Of *Shorish, Yasmeen L - shorisyl
> *Sent:* Thursday, April 27, 2017 12:35 PM
> *To:* Research Data, Access and Preservation <rdap at asis.org>
> *Subject:* Re: [Rdap] data repository assistance please
>
>
>
> Hi Daureen,
>
>
>
> We missed you in Seattle :) Wouldn’t your researcher’s desire to share
> this data be limited by the IRB protocol? The lack of de-identification and
> the subjective “qualified researchers” seems to limit this dataset as a
> sharable asset, IMO.
>
>
>
> -Yasmeen
>
> --
>
> Yasmeen Shorish
>
> Data Services Coordinator, Assoc. Professor
>
> Rose Library 2309
>
> James Madison University
>
> MSC 4601
>
> Harrisonburg, VA 22807
>
> 540.568.4288 <(540)%20568-4288>
>
> *ORCID: 0000-0002-4155-8241*
>
> http://works.bepress.com/yasmeen_shorish/
>
> *http://www.lib.jmu.edu/yasmeen <http://www.lib.jmu.edu/yasmeen> *
>
>
>
> *From: *Rdap on behalf of Daureen Nesdill
> *Reply-To: *"Research Data, Access and Preservation"
> *Date: *Thursday, April 27, 2017 at 2:03 PM
> *To: *"Research Data, Access and Preservation"
> *Subject: *[Rdap] data repository assistance please
>
>
>
> Hi all – Hope you had fun in Seattle.
>
>
>
> I have a researcher in psych with spreadsheet data that cannot be
> de-identified. She wants to publish this data in a repository that freezes
> and time stamps the data, in addition to being only available to qualified
> researchers.
>
>
>
> Any ideas?
>
> We have investigated ICPSR, and re3data.
>
>
>
> Daureen
>
>
>
> Daureen Nesdill, MS, MLIS
>
> Research Data Management Librarian
>
> The Faculty Center @ the Marriott Library
>
> daureen.nesdill at utah.edu
>
> 801-58*5-5975*
>
> ORCID http://orcid.org/0000-0003-0126-5038
> <https://urldefense.proofpoint.com/v2/url?u=http-3A__orcid.org_0000-2D0003-2D0126-2D5038&d=DwMFAg&c=eLbWYnpnzycBCgmb7vCI4uqNEB9RSjOdn_5nBEmmeq0&r=TkWm5-BITfd1ajk2ZCG2Yw&m=-fTpP-6Gl0FUOD-lKnmQJlZily8EEKumJlmotjL7P68&s=2FQ1V5f7M-tVqREw0FY69atvqTBAYi71e61Yby2BF9k&e=>
>
>
>
>
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