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  <identifier identifierType="DOI">10.5064/F6LXO8PS</identifier>
  <creators>
    <creator>
      <creatorName nameType="Organizational">HealthyVOICES Project 0000-0002-9487-1493</creatorName>
      <affiliation affiliationIdentifier="https://ror.org/0130frc33" schemeURI="https://ror.org" affiliationIdentifierScheme="ROR">University of North Carolina at Chapel Hill</affiliation>
    </creator>
  </creators>
  <titles>
    <title>Data for: Healthy Volunteers’ Perceptions of Risk in U.S. Phase I Clinical Trials: A Mixed-methods Study</title>
  </titles>
  <publisher>Qualitative Data Repository</publisher>
  <publicationYear>2018</publicationYear>
  <subjects>
    <subject>Social Sciences</subject>
    <subject>risk perceptions</subject>
    <subject>healthy volunteer</subject>
    <subject>phase I clinical trial</subject>
    <subject>pharmaceutical</subject>
    <subject schemeURI="https://www.icpsr.umich.edu/icpsrweb/ICPSR/thesaurus/index" subjectScheme="ICPSR Subject Thesaurus">health behavior</subject>
    <subject schemeURI="https://www.icpsr.umich.edu/icpsrweb/ICPSR/thesaurus/index" subjectScheme="ICPSR Subject Thesaurus">medication</subject>
    <subject schemeURI="https://www.icpsr.umich.edu/icpsrweb/ICPSR/thesaurus/index" subjectScheme="ICPSR Subject Thesaurus">medical ethics</subject>
  </subjects>
  <contributors>
    <contributor contributorType="Distributor">
      <contributorName nameType="Organizational">Qualitative Data Repository</contributorName>
      <affiliation>Syracuse University</affiliation>
    </contributor>
    <contributor contributorType="ContactPerson">
      <contributorName nameType="Personal">Fisher, Jill</contributorName>
      <givenName>Jill</givenName>
      <familyName>Fisher</familyName>
      <affiliation>Department of Social Medicine and Center for Bioethics, University of North Carolina at Chapel Hill</affiliation>
    </contributor>
    <contributor contributorType="ProjectLeader">
      <contributorName nameType="Personal">Fisher, Jill A.</contributorName>
      <givenName>Jill A.</givenName>
      <familyName>Fisher</familyName>
    </contributor>
    <contributor contributorType="Other">
      <contributorName nameType="Personal">Cottingham, Marci, Ph.D.</contributorName>
    </contributor>
    <contributor contributorType="Other">
      <contributorName nameType="Personal">Davis, Arlene, JD.</contributorName>
    </contributor>
    <contributor contributorType="Other">
      <contributorName nameType="Personal">de Guzman, Rebecca, Ph.D.</contributorName>
    </contributor>
    <contributor contributorType="Other">
      <contributorName nameType="Personal">Monahan, Torin, Ph.D.</contributorName>
    </contributor>
    <contributor contributorType="Other">
      <contributorName nameType="Personal">Roman Isler, Malika, Ph.D.</contributorName>
    </contributor>
    <contributor contributorType="Other">
      <contributorName nameType="Personal">Walker, Rebecca, Ph.D.</contributorName>
    </contributor>
    <contributor contributorType="ProjectManager">
      <contributorName nameType="Personal">Kalbaugh, Julianne M., M.Div.</contributorName>
      <givenName>Julianne</givenName>
    </contributor>
    <contributor contributorType="Other">
      <contributorName nameType="Personal">McManus, Lisa, M.S.</contributorName>
    </contributor>
    <contributor contributorType="Other">
      <contributorName nameType="Personal">Wood, Megan, M.A.</contributorName>
    </contributor>
    <contributor contributorType="Other">
      <contributorName nameType="Personal">Edelblute, Heather</contributorName>
      <givenName>Heather</givenName>
      <familyName>Edelblute</familyName>
    </contributor>
  </contributors>
  <dates>
    <date dateType="Submitted">2018-10-12</date>
    <date dateType="Available">2018-10-26</date>
    <date dateType="Updated">2023-11-01</date>
    <date dateType="Other" dateInformation="Time period covered by the data">2013-05-01/2013-12-20</date>
  </dates>
  <resourceType resourceTypeGeneral="Dataset">coded qualitative data</resourceType>
  <relatedIdentifiers>
    <relatedIdentifier relationType="IsSupplementTo" relatedIdentifierType="DOI">10.1371/JOURNAL.PMED.1002698</relatedIdentifier>
    <relatedIdentifier relationType="HasPart" relatedIdentifierType="DOI">10.5064/F6LXO8PS/DZSQNN</relatedIdentifier>
    <relatedIdentifier relationType="HasPart" relatedIdentifierType="DOI">10.5064/F6LXO8PS/3QVDV1</relatedIdentifier>
    <relatedIdentifier relationType="HasPart" relatedIdentifierType="DOI">10.5064/F6LXO8PS/RHHCFS</relatedIdentifier>
    <relatedIdentifier relationType="HasPart" relatedIdentifierType="DOI">10.5064/F6LXO8PS/GUW7M6</relatedIdentifier>
  </relatedIdentifiers>
  <sizes>
    <size>70530</size>
    <size>98273</size>
    <size>2835</size>
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    <format>application/pdf</format>
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    <format>application/pdf</format>
    <format>application/pdf</format>
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  <version>2.0</version>
  <rightsList>
    <rights rightsURI="info:eu-repo/semantics/restrictedAccess"/>
    <rights rightsURI="https://qdr.syr.edu/policies/qdr-standard-access-conditions" xml:lang="en">Qualitative Data Repository Standard Access Conditions</rights>
  </rightsList>
  <descriptions>
    <description descriptionType="Abstract">These data include excerpts from interviews that were part of an initial &amp;quot;baseline&amp;quot; interview as part of the HealthyVOICES study (http://healthyvoices.web.unc.edu). The study examined the risk perceptions (among other things) of healthy people who enroll for financial compensation in Phase I pharmaceutical drug trials. All the excerpts were coded with the parent code &amp;quot;Risk Perception.&amp;quot; These include their initial perceptions of risk, their current general perceptions, and study-specific perceptions. Where information contained in the excerpt might have been identifying to the participant or clinic at which they participated, we redacted potentially compromising words. For our use of these data, we analyzed these risk perceptions in the article which this dataset supplements. Detailed information in our study methods can be found in that article as well as in the following published articles:
- Edelblute, H. B., &amp;amp; Fisher, J. A. (2015). Using &amp;quot;Clinical Trial Diaries&amp;quot; to Track Patterns of Participation for Serial Healthy Volunteers in U.S. Phase I Studies. Journal of Empirical Research on Human Research Ethics, 10(1), 65-75. 
- Cottingham, M. D., &amp;amp; Fisher, J. A. (2016). Risk and Emotion among Healthy Volunteers in Clinical Trials. Social Psychology Quarterly, 79(3), 222–242. 

The data are organized by participant ID so that all quotes from a single participant are grouped together. However, they might not appear in the order in which they were spoken during the interview. Some excerpts have time stamps that can provide a sense of where they occurred in the interview.</description>
  </descriptions>
  <fundingReferences>
    <fundingReference>
      <funderName>National Institute of General Medical Sciences</funderName>
      <funderIdentifier funderIdentifierType="ROR" schemeURI="https://ror.org">https://ror.org/04q48ey07</funderIdentifier>
      <awardNumber>R01GM099952</awardNumber>
    </fundingReference>
  </fundingReferences>
</resource>
