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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
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1 to 1 of 1 Research Studies DisplayedThiel DB, Platt J, Platt T
Testing an online, dynamic consent portal for large population biobank research.
Michigan's BioTrust for Health contains over 4 million samples collected without written consent. Participant-centric initiatives are IT tools that hold great promise to address the consent challenges in biobank research. The authors created and pilot tested a dynamic informed consent simulation focusing on consent for research. Pilot testers raised concerns about the process of identity verification and appeared to have little experience with sharing health information online. The authors recommended applying online, dynamic approaches to address the consent challenges raised by biobanks with legacy sample collections.
AHRQ-funded; HS000053.
Citation: Thiel DB, Platt J, Platt T .
Testing an online, dynamic consent portal for large population biobank research.
Public Health Genomics 2015;18(1):26-39. doi: 10.1159/000366128.
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Keywords: Data, Newborns/Infants, Research Methodologies, Screening