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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 - 6 of 6 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: Incidental Findings Choice Document
Year: 2015This questionnaire enables research participants to review categories of incidental findings that might be revealed during an exome test and select the categories of results that they would like to
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] -
Expanded Carrier Screening Questionnaire
Year: 2020Conjin and colleagues created this questionnaire to assess genetic knowledge, the perceived severity of MPS III (Sanfilippo disease), perceived risk, and attitudes toward expanded carrier screening
Research Population: AdultsContact: [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] -
The Public Understanding and Attitudes towards Genetics and Genomics (PUGGS) Questionnaire
Year: 2017Carver and colleagues developed the Public Understanding and Attitudes towards Genetics and Genomics (PUGGS) questionnaire to assess college students' knowledge of genetics, including gene-env
Research Population: AdultsContact: [email protected]