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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 - 10 of 13 Research Tools
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Genetic Literacy Fast Test (GeneLiFT)
Year: 2020The Genetic Literacy Fast Test (GeneLiFT) is a self-administered genetic literacy test for individuals who intend to undergo genetic screening with return of results.
Research Population: AdultsValidation(s):- Rasouly, M. H., Cuneo, N., Marasa, M., DeMaria, N., Chatterjee, D., Thompson, J. J., Fasel, D. A., Wynn, J., Chung, W., Appelbaum, P., Weng, C., Bakken, S., & Gharavi, A. G. (2020). GeneLiFT: A novel test to facilitate rapid screening of genetic literacy in a diverse population undergoing genetic testing. Journal of Genetic Counseling, 00, 1–13.
Contact: [email protected] -
CSER Phase 1: MIONCOSEQ Study Patient Vignettes
These patient vignettes, based on the experiences of real participants in the Michigan Oncology Sequencing Center (MI-ONCOSEQ) DNA sequencing study, help adults understand what to expect should the
Research Population: Adults -
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] -
Semi-structured Interview Guide, Recall by Genotype (RbG) Research
Year: 2018This topic guide can be used to interview research participants on their perceptions of recall by genotype research, which recruits on the basis of genotype.
Research Population: AdultsContact: [email protected] -
Family Health History Interview Guide
Year: 2016Chen and colleagues developed this qualitative interview guide to explore the topic of family health history with Chinese Americans in the United States.
Research Population: AdultsContact: [email protected] -
Interview Guide: Experiences of Sharing Direct-to-Consumer Genetic Testing Results
Year: 2018This interview guide seeks to understand the experiences of those who publicly shared their direct-to-consumer genetic testing results on the online platform openSNP.
Research Population: Adults -
Semi-structured Interview Guide: Experiences with Personal Genomic Testing
Year: 2020This semi-structured interview guide explores perceptions and use of personal genomic testing (PGT).
Research Population: Adults -
Semi-Structured Interview Guide: Storage and Use of Residual Newborn Bloodspots
Year: 2014Botkin and colleagues created this semi-structured interview guide to uncover what prospective parents are interested in knowing about the practice of retaining residual newborn screening bloodspot
Research Population: ParentsContact: [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] -
eMERGE III Health Care Provider Work Group: Pre-return of Results Physician Interview Guide
Year: 2019This semi-structured interview guide provides physicians with scenarios in which adult and pediatric patients receive unsolicited genomic results and elicits their views about the need for provider
Research Population: PhysiciansContact: [email protected]