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Report about a workshop on sensitive data: Repositories for sharing individual participant data from clinical trials and existing tools/services for storing clinical trial data

Banzi, Rita; Canham, Steve; Ohmann, Christian; Kuchinke, Wolfgang; Krleza-Jeric, Karmela; Tilki, Birol; Battaglia, Serena; Demotes-Mainard, Jacques


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  <identifier identifierType="DOI">10.5281/zenodo.1438261</identifier>
  <creators>
    <creator>
      <creatorName>Banzi, Rita</creatorName>
      <givenName>Rita</givenName>
      <familyName>Banzi</familyName>
      <nameIdentifier nameIdentifierScheme="ORCID" schemeURI="http://orcid.org/">0000-0002-2211-3300</nameIdentifier>
      <affiliation>Istituto di Ricerche Farmacologiche Mario Negri, IRCCS, Milan, Italy</affiliation>
    </creator>
    <creator>
      <creatorName>Canham, Steve</creatorName>
      <givenName>Steve</givenName>
      <familyName>Canham</familyName>
      <nameIdentifier nameIdentifierScheme="ORCID" schemeURI="http://orcid.org/">0000-0002-4409-8834</nameIdentifier>
      <affiliation>Canham Information Systems, Surrey, UK</affiliation>
    </creator>
    <creator>
      <creatorName>Ohmann, Christian</creatorName>
      <givenName>Christian</givenName>
      <familyName>Ohmann</familyName>
      <nameIdentifier nameIdentifierScheme="ORCID" schemeURI="http://orcid.org/">0000-0002-5919-1003</nameIdentifier>
      <affiliation>European Clinical Research Infrastructure Network (ECRIN), Düsseldorf, Germany</affiliation>
    </creator>
    <creator>
      <creatorName>Kuchinke, Wolfgang</creatorName>
      <givenName>Wolfgang</givenName>
      <familyName>Kuchinke</familyName>
      <nameIdentifier nameIdentifierScheme="ORCID" schemeURI="http://orcid.org/">0000-0002-2809-6900</nameIdentifier>
      <affiliation>Coordination Centre for Clinical Trials, Heinrich-Heine-University, Düsseldorf, Germany</affiliation>
    </creator>
    <creator>
      <creatorName>Krleza-Jeric, Karmela</creatorName>
      <givenName>Karmela</givenName>
      <familyName>Krleza-Jeric</familyName>
      <nameIdentifier nameIdentifierScheme="ORCID" schemeURI="http://orcid.org/">0000-0001-9377-0917</nameIdentifier>
      <affiliation>IMProving Accesss to Clincal Trial data (IMPACT) Observatory,  Mediterranean Institute for Life Sciences (MedILS), Split, Croatia</affiliation>
    </creator>
    <creator>
      <creatorName>Tilki, Birol</creatorName>
      <givenName>Birol</givenName>
      <familyName>Tilki</familyName>
      <affiliation>Coordination Centre for Clinical Trials, Heinrich-Heine-University, Düsseldorf, Germany</affiliation>
    </creator>
    <creator>
      <creatorName>Battaglia, Serena</creatorName>
      <givenName>Serena</givenName>
      <familyName>Battaglia</familyName>
      <affiliation>European Clinical Research Infrastructure Network (ECRIN), Paris, France</affiliation>
    </creator>
    <creator>
      <creatorName>Demotes-Mainard, Jacques</creatorName>
      <givenName>Jacques</givenName>
      <familyName>Demotes-Mainard</familyName>
      <nameIdentifier nameIdentifierScheme="ORCID" schemeURI="http://orcid.org/">0000-0002-0807-0746</nameIdentifier>
      <affiliation>European Clinical Research Infrastructure Network (ECRIN), Paris, France</affiliation>
    </creator>
  </creators>
  <titles>
    <title>Report about a workshop on sensitive data: Repositories for sharing individual participant data from clinical trials and existing tools/services for storing clinical trial data</title>
  </titles>
  <publisher>Zenodo</publisher>
  <publicationYear>2018</publicationYear>
  <subjects>
    <subject>CORBEL</subject>
    <subject>data sharing</subject>
    <subject>individual participant data</subject>
    <subject>clinical trial</subject>
    <subject>repository</subject>
    <subject>tools</subject>
    <subject>services</subject>
    <subject>data storage</subject>
  </subjects>
  <dates>
    <date dateType="Issued">2018-09-28</date>
  </dates>
  <language>en</language>
  <resourceType resourceTypeGeneral="Text">Report</resourceType>
  <alternateIdentifiers>
    <alternateIdentifier alternateIdentifierType="url">https://zenodo.org/record/1438261</alternateIdentifier>
  </alternateIdentifiers>
  <relatedIdentifiers>
    <relatedIdentifier relatedIdentifierType="DOI" relationType="IsVersionOf">10.5281/zenodo.1438260</relatedIdentifier>
    <relatedIdentifier relatedIdentifierType="URL" relationType="IsPartOf">https://zenodo.org/communities/ecrin</relatedIdentifier>
  </relatedIdentifiers>
  <version>1</version>
  <rightsList>
    <rights rightsURI="https://creativecommons.org/licenses/by/4.0/legalcode">Creative Commons Attribution 4.0 International</rights>
    <rights rightsURI="info:eu-repo/semantics/openAccess">Open Access</rights>
  </rightsList>
  <descriptions>
    <description descriptionType="Abstract">&lt;p&gt;The workshop on sensitive data was performed within the CORBEL project and was held on 14 June 2018 in Paris, France. The report was prepared by the CORBEL WT3.3 project group and covers the following areas:&lt;/p&gt;

&lt;p&gt;&lt;strong&gt;1.&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp; Background &lt;/strong&gt;(from the CORBEL project)&lt;/p&gt;

&lt;p&gt;&lt;strong&gt;2.&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp; Assessment of existing repositories for sharing individual participant data (IPD) from clinical trials&lt;/strong&gt;&lt;br&gt;
(Study protocol (March 2018), Status report on assessment of data repositories (June 2018))&lt;/p&gt;

&lt;p&gt;&lt;strong&gt;3.&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp; Survey of existing tools/services for storing clinical trial data&lt;/strong&gt;&lt;br&gt;
&amp;nbsp;&lt;/p&gt;</description>
  </descriptions>
  <fundingReferences>
    <fundingReference>
      <funderName>European Commission</funderName>
      <funderIdentifier funderIdentifierType="Crossref Funder ID">10.13039/501100000780</funderIdentifier>
      <awardNumber awardURI="info:eu-repo/grantAgreement/EC/H2020/654248/">654248</awardNumber>
      <awardTitle>Coordinated Research Infrastructures Building Enduring Life-science services</awardTitle>
    </fundingReference>
  </fundingReferences>
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