Discover data collection instruments and related materials in the Research Tools database. Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
1 - 5 of 5 Research Tools
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CSER Phase 1: Genetic Information Nondiscrimination Act (GINA) Fact Sheet: "GINA & You"
Year: 2010This fact sheet describes the rights protected by the Genetic Information Nondiscrimination Act of 2008 in an easy to read format.
Research Population: Adults -
Genomics ADvISER
Year: 2021Genomics ADvISER is a digital decision aid for use in the delivery of genomic counseling. It is intended as a supplement to genomic counseling with a counselor.
Research Population: AdultsContact: [email protected] -
Optional Results Choice Aid (ORCA)
Year: 2021The Optional Results Choice Aid (ORCA) is a decision aid to support informed, values based decision-making for adult patients and research participants about the reciept of medically actionable, ad
Research Population: AdultsContact: [email protected] -
Patient Focus Group Guide, Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2015This focus group guide assesses patient attitudes toward research on medical practices within usual care.
Research Population: AdultsValidation(s):- Kraft, S. A., Constantine, M., Magnus, D., Porter, K. M., Lee, S. S. J., Green, M., Kass, N. E., Wilfond, B. S., Cho, M. K. (2017). A randomized study of multimedia informational aids for research on medical practices: Implications for informed consent. Clinical Trials, 14(1), 94-102.
Contact: [email protected] -
Focus Group Guide: Introduction to Gene Drive Technologies for Lay Audiences
Year: 2020Schairer and colleagues created this focus group guide which includes moderator questions that evaluate the effectiveness of a set of 4 narrated slide show videos about gene drive technologies for
Research Population: AdultsContact: [email protected]