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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 47
Genetic Literacy Survey
Abrams and colleagues designed the Genetics Literacy Survey to gather information about how the public understands genomics and applies their knowledge in everyday scenarios beyond medical settings
Abrams, L. R., McBride, C. M., Hooker, G. W., Cappella, J. N., & Koehly, L. M. (2015). The many facets of genetic literacy: Assessing the scalability of multiple measures for broad use in survey research. PLOS ONE, 10(10), e0141532.
- Abrams, L. R., McBride, C. M., Hooker, G. W., Cappella, J. N., & Koehly, L. M. (2015). The Many Facets of Genetic Literacy: Assessing the Scalability of Multiple Measures for Broad Use in Survey Research. PLOS ONE, 10(10), e0141532.
Misattributed Paternity Questionnaire
Lowe and colleagues developed a questionnaire containing two scenarios in which misattributed paternity is incidentally discovered, possible courses of action for the doctor in each scenario, and a
Lowe, G., Pugh, J., Kahane, G., Corben, L., Lewis, S., Delatycki, M., & Savulescu, J. (2017). How should we deal with misattributed paternity? A survey of lay public attitudes. AJOB Empirical Bioethics, 8(4), 234–242.
Preferences Instrument for Genomic Secondary Results (PIGSR)
The PIGSR is a brief instrument that enables adult respondents the ability to express their preferences or opt out of getting secondary results.
Brothers, K. B., East, K. M., Kelley, W. V., Wright, M. F., Westbrook, M. J., Rich, C. A., Bowling, K. M., Lose, E. J., Bebin, E. M., Simmons, S., Myers, J. A., Barsh, G., Myers, R. M., Cooper, G. M., Pulley, J. M., Rothstein, M. A., Wright Clayton, E. (2017). Eliciting preferences on secondary findings: the Preferences Instrument for Genomic Secondary Results. Genetics in Medicine, 19(3), 337-334.
My46: A Web-based Tool for Self-guided Management of Genomic Test Results
Tabor and colleagues developed My46, a self-guided, web-based information management system for individuals undergoing genetic testing in clinical and research settings, to enable them to choose wh
Tabor, H. K., Jamal, S. M., Yu, J., Crouch, J. M., Shankar, A. G., Dent, K. M., Anderson, N., Miller, D. A., Futral, B. T., Bamshad, M. J. (2017). My46: a Web-based tool for self-guided management of genomic test results in research and clinical settings. Genetics in Medicine, 19(4), 467-475.
Genetic Literacy and Comprehension (GLAC) Measure
Hooker and colleagues designed the Genetic Literacy and Comprehension (GLAC) measure to assess research participant familiarity with eight commonly used genetic terms and concepts (genetic, chromos
Hooker, G. W., Peay, H., Erby, L., Bayless, T., Biesecker, B. B., & Roter, D. L. (2014). Genetic literacy and patient perceptions of IBD testing utility and disease control: a randomized vignette study of genetic testing. Inflammatory bowel diseases, 20(5), 901-908.
CSER Phase 2 Adult Patient Measures – BASELINE
This baseline measure for adults enables the collection of information on sex, age, language, income, education level, insurance status, country of origin, access to care, health literacy, subjecti
CSER Phase 2 Adult Decliner Survey
This survey for study decliners captures demographic and insurance status information and elicits information about why participants declined to join the study such as privacy concerns, refusal to
Site Specific Tools for Participant Choices for Return of Genomic Results in the eMERGE Network
Several study sites in the third phase of the electronic MEdical Records and GEnomics (eMERGE) Network implemented protocols to enable research participants to choose the type of secondary results
Hoell, C., Wynn, J., Rasmussen, L.V., Marsolo, K., Aufox, S. A., Connoly, J. J., Freimuth, R. R., Kochan, D., Hakonarson, H., Harr, M., Holm, I. A., Kullo, I., Lammers, P. E., Leppig, K. A., Leslie, N., Myers, M. F., Sharp, R. D., Smith, M. E., Prows, C. A. (2020). Participant choices for return of genomic results in the eMERGE Network. Genet Med, 22(11), 1821–1829.
CSER Phase 2 Patient Reported Utility (PRU) of Clinical Sequencing Survey
The Patient Reported Utility (PRU) of Clinical Sequencing Survey asks participants to rate how useful they find nineteen outcomes of genome sequencing on a scale ranging from 1 (not at all useful)
CSER Phase 2 Patient-Initiated Actions Attributable to Genomic Testing (PIA) Survey
The Patient-Initiated Actions Attributable to Genomic Testing Survey, developed by the Clinical Utility, Health Economics, and Policy (CUHEP) working group, asks adult patients to report whether th