<div dir="ltr">Hi Daureen,<div><br></div><div><br><div>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 <a href="https://www.nimh.nih.gov/about/directors/thomas-insel/blog/2015/viewing-the-starrs-data.shtml" target="_blank">"Framingham Heart Study" of mental health</a> available through restricted access at ICPSR (<a href="http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/35197" target="_blank">http://www.icpsr.umich.edu/ic<wbr>psrweb/ICPSR/studies/35197</a>. You may also want to contact <a href="http://www.norc.org/Research/Capabilities/Pages/data-enclave.aspx" target="_blank">NORC data enclave at UChicago</a> (<a href="http://www.norc.org/Research/Projects/Pages/star-adult-behavioral-health-survey.aspx" target="_blank">http://www.norc.org/Research/<wbr>Projects/Pages/star-adult-beha<wbr>vioral-health-survey.aspx</a>).</div><div><br></div><div>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...</div><div><br></div><div><a href="http://neuroinformatics.harvard.edu/gsp/get/" target="_blank">http://neuroinformatics.harvar<wbr>d.edu/gsp/get/</a><br></div><div><br></div><div><a href="https://ida.loni.usc.edu/collaboration/access/appLicense.jsp;jsessionid=4DF95AC1BFF06BDB41E308CC16184F6B" target="_blank">https://ida.loni.usc.edu/colla<wbr>boration/access/appLicense.jsp<wbr>;jsessionid=4DF95AC1BFF06BDB41<wbr>E308CC16184F6B</a><br></div><div><br></div><div><a href="https://blogs.biomedcentral.com/bmcblog/2016/06/21/progress-sharing-of-clinical-data/" target="_blank">https://blogs.biomedcentral.co<wbr>m/bmcblog/2016/06/21/progress-<wbr>sharing-of-clinical-data/</a><br></div><div><br></div><div><a href="https://www.nature.com/articles/sdata201531" target="_blank">https://www.nature.com/article<wbr>s/sdata201531</a></div></div><div><br></div><div>Best,</div><div><br></div><div>Andrew</div><div class="gmail_extra"><br clear="all"><div><div class="gmail_signature" data-smartmail="gmail_signature"><div dir="ltr"><div><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div><font face="arial, helvetica, sans-serif">--</font></div><div><span style="background-color:rgb(255,255,255)"><font color="#783f04"><font size="1">Andrew Creamer <span style="font-family:Arial">| </span>Scientific Data Management</font><br></font></span></div><div><span style="color:rgb(120,63,4);font-size:x-small">Brown University Library </span><span style="color:rgb(120,63,4);font-size:x-small;font-family:Arial">| </span><span style="color:rgb(120,63,4);font-size:x-small">Center for Digital Scholarship </span><span style="color:rgb(120,63,4);font-size:x-small;font-family:Arial"> </span><br></div><div><div style="font-size:13px"><span style="background-color:rgb(255,255,255)"><font size="1" color="#783f04">234 Rockefeller Library <span style="font-family:Arial">| </span>Providence, RI </font></span></div><div><br><br></div></div></div></div></div></div></div></div></div></div>
<br><div class="gmail_quote">On Thu, Apr 27, 2017 at 4:06 PM, Koshoffer, Amy (koshofae) <span dir="ltr"><<a href="mailto:KOSHOFAE@ucmail.uc.edu" target="_blank">KOSHOFAE@ucmail.uc.edu</a>></span> wrote:<br><blockquote class="gmail_quote" style="margin:0 0 0 .8ex;border-left:1px #ccc solid;padding-left:1ex">
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<div>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. <br>
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Sent from my iPhone</div><div><div class="h5">
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On Apr 27, 2017, at 1:44 PM, Daureen Nesdill <<a href="mailto:daureen.nesdill@utah.edu" target="_blank">daureen.nesdill@utah.edu</a>> wrote:<br>
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<p class="MsoNormal"><span style="color:#1f497d">If people request the data ICPSR will require them to go through IRB and pay ICPSR a fee.<u></u><u></u></span></p>
<p class="MsoNormal"><span style="color:#1f497d">The researcher indicated that having users pay the fee means it is not open access. I do not entirely agree.<u></u><u></u></span></p>
<p class="MsoNormal"><span style="color:#1f497d"><u></u> <u></u></span></p>
<p class="MsoNormal"><span style="color:#1f497d">Daureen<u></u><u></u></span></p>
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<p class="MsoNormal"><b>From:</b> Rdap [<a href="mailto:rdap-bounces@asis.org" target="_blank">mailto:rdap-bounces@asis.org</a>]
<b>On Behalf Of </b>Shorish, Yasmeen L - shorisyl<br>
<b>Sent:</b> Thursday, April 27, 2017 12:35 PM<br>
<b>To:</b> Research Data, Access and Preservation <<a href="mailto:rdap@asis.org" target="_blank">rdap@asis.org</a>><br>
<b>Subject:</b> Re: [Rdap] data repository assistance please<u></u><u></u></p>
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<p class="MsoNormal"><span style="font-family:"Arial",sans-serif;color:black">Hi Daureen,</span><span style="font-size:12.0pt;font-family:"Arial",sans-serif;color:black"><u></u><u></u></span></p>
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<p class="MsoNormal"><span style="font-family:"Arial",sans-serif;color:black">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. <u></u><u></u></span></p>
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<p class="MsoNormal"><span style="font-family:"Arial",sans-serif;color:black">-Yasmeen<u></u><u></u></span></p>
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<p class="MsoNormal"><span style="font-size:11.5pt;font-family:"Avenir",serif;color:black">-- </span><span style="font-size:10.5pt;font-family:"Avenir",serif;color:black"><u></u><u></u></span></p>
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<p class="MsoNormal"><span style="font-size:11.5pt;color:black">Yasmeen Shorish</span><span style="font-size:12.0pt;font-family:"Times New Roman",serif;color:black"><u></u><u></u></span></p>
<p class="MsoNormal"><span style="font-size:11.5pt;color:black">Data Services Coordinator, Assoc. Professor</span><span style="color:black"><u></u><u></u></span></p>
<p class="MsoNormal"><span style="font-size:11.5pt;color:black">Rose Library 2309</span><span style="color:black"><u></u><u></u></span></p>
<p class="MsoNormal"><span style="font-size:11.5pt;color:black">James Madison University</span><span style="color:black"><u></u><u></u></span></p>
<p class="MsoNormal"><span style="font-size:11.5pt;color:black">MSC 4601</span><span style="color:black"><u></u><u></u></span></p>
<p class="MsoNormal"><span style="font-size:11.5pt;color:black">Harrisonburg, VA 22807</span><span style="color:black"><u></u><u></u></span></p>
<p class="MsoNormal"><span style="font-size:11.5pt;color:black"><a href="tel:(540)%20568-4288" value="+15405684288" target="_blank">540.568.4288</a></span><span style="color:black"><u></u><u></u></span></p>
<p class="MsoNormal"><i><span style="font-size:11.5pt;color:#1f497d">ORCID: 0000-0002-4155-8241</span></i><span style="color:black"><u></u><u></u></span></p>
<p class="MsoNormal"><span style="color:black"><a href="http://works.bepress.com/yasmeen_shorish/" target="_blank"><span style="font-size:11.5pt">http://works.bepress.com/<wbr>yasmeen_shorish/</span></a><u></u><u></u></span></p>
<p class="MsoNormal"><u><span style="font-size:11.5pt;color:#0000ee"><a href="http://www.lib.jmu.edu/yasmeen" target="_blank">http://www.lib.jmu.edu/yasmeen</a><wbr> </span></u><span style="color:black"><u></u><u></u></span></p>
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<p class="MsoNormal"><b><span style="color:black">From: </span></b><span style="color:black">Rdap on behalf of Daureen Nesdill<br>
<b>Reply-To: </b>"Research Data, Access and Preservation"<br>
<b>Date: </b>Thursday, April 27, 2017 at 2:03 PM<br>
<b>To: </b>"Research Data, Access and Preservation"<br>
<b>Subject: </b>[Rdap] data repository assistance please<u></u><u></u></span></p>
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<p class="MsoNormal"><span style="color:black">Hi all – Hope you had fun in Seattle.<u></u><u></u></span></p>
<p class="MsoNormal"><span style="color:black"> <u></u><u></u></span></p>
<p class="MsoNormal"><span style="color:black">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.<u></u><u></u></span></p>
<p class="MsoNormal"><span style="color:black"> <u></u><u></u></span></p>
<p class="MsoNormal"><span style="color:black">Any ideas?<u></u><u></u></span></p>
<p class="MsoNormal"><span style="color:black">We have investigated ICPSR, and re3data.<u></u><u></u></span></p>
<p class="MsoNormal"><span style="color:black"> <u></u><u></u></span></p>
<p class="MsoNormal"><span style="color:black">Daureen<u></u><u></u></span></p>
<p class="MsoNormal"><span style="color:black"> <u></u><u></u></span></p>
<p class="MsoNormal"><span style="color:black">Daureen Nesdill, MS, MLIS<u></u><u></u></span></p>
<p class="MsoNormal"><span style="color:black">Research Data Management Librarian<u></u><u></u></span></p>
<p class="MsoNormal"><span style="color:black">The Faculty Center @ the Marriott Library<u></u><u></u></span></p>
<p class="MsoNormal"><span style="color:black"><a href="mailto:daureen.nesdill@utah.edu" target="_blank">daureen.nesdill@utah.edu</a><u></u><u></u></span></p>
<p class="MsoNormal"><span style="color:black">801-58<b>5-5975</b><u></u><u></u></span></p>
<p class="MsoNormal"><span style="color:black">ORCID <a href="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=" target="_blank">
http://orcid.org/0000-0003-<wbr>0126-5038</a> <u></u><u></u></span></p>
<p class="MsoNormal"><span style="color:black"> <u></u><u></u></span></p>
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