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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
11 - 20 of 32 Research Tools
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The Personal Utility Scale (PrU)
Year: 2023The 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)
Research Population: AdultsValidation(s):Turbitt, E., Kohler, J. N., Angelo, F., Miller, I. M., Lewis, K. L., Goddard, K. A. B., Wilfond, B. S, Biesecker, B. B., & Leo, M. C. (2023) The PrU: Development and validation of a measure to assess personal utility of genomic results. Genetics in Medicine, 25(3), 100356.
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Making improvements in hospital care survey
Year: 2016The Making Improvements in Hospital Care Survey is a 32-item survey instrument designed to measure patient preferences for consent to non-invasive, quality improvement interventions in the hospital
Research Population: AdultsValidation(s):- Kaplan, S. H., Gombosev, A., Fireman, S., Sabin, J., Heim, L., Shimelman, L., Kaganov, R., Osann, K., Tjoa, T. & Huang, S. S. (2016). The patient's perspective on the need for informed consent for minimal risk studies: Development of a survey-based measure. AJOB Empirical Bioethics, 7(2), 116-124.
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Instrument for assessing mass media reporting of disease-related genetic discoveries
Year: 2002Instrument for assessing mass media reporting of disease-related genetic discoveries is a 38-item tool for evaluating the quality and balance of media stories reporting genetic discoveries related
Research Population: N/AValidation(s):- Mountcastle-Shah, E., Tambor, E., Bernhardt, B. A., Geller, G., Karaliukas, R., Rodgers, J. E., & Holtzman, N. A. (2003). Assessing mass media reporting of disease-related genetic discoveries: Development of an instrument and initial findings. Science Communication, 24(4), 458-478.
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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.
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Genetic Essentialism Scale for Race (GESR)
Year: 2019The Genetic Essentialism Scale for Race (GESR) measures beliefs about the relationship between genes and race with 15 items.
Research Population: AdultsValidation(s):- Yaylacı, Ş., Roth, W. D., & Jaffe, K. (2019). Measuring racial essentialism in the genomic era: The genetic essentialism scale for race (GESR). Current Psychology, 1-15.
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Genome Empowerment Scale (GEmS)
Year: 2019The GEmS can be used to assess the genomic healthcare empowerment of parents (e.g., the meaning of a diagnosis for their child, emotional management of the process, their confidence in utilizing th
Research Population: ParentsValidation(s):- McConkie-Rosell, A., Schoch, K., Sullivan, J., Spillmann, R. C., Cope, H., Tan, Q. K.-G., Palmer, C. G. S., Undiagnosed Disease Network,, Hooper, S. R., & Shashi, V. (2021). Clinical application of a scale to assess genomic healthcare empowerment (GEmS): Process and illustrative case examples. Journal of Genetic Counseling. Epub ahead of print.
- McConkie-Rosell, A., Schoch, K., Sullivan, J., Cope, Heidi, Spillmann, R. C., Palmer, C. G. S., Pena, Loren, Jiang, Y., Daniels, N., Walley, N., Tan, K. G., Undiagnosed Diseases Network, Hooper, S. R., Shashi, V. (2019). The Genome Empowerment Scale (GEmS): An assessment of parental empowerment in families with undiagnosed diseases. Clinical Genetics, 96(6), 521-531.
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Which Medication is Best? (Video), Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2015This 3 minute video was utilized in the ROMP study, which assessed adult patient's attitudes toward research on medical practices in the context of 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.
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Approaches to Research on Medical Practices (Video), Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2015This 3 minute video was utilized in the ROMP study, which assessed adult patient's attitudes toward research on medical practices in the context of 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.
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Informing or Asking (Video), Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2015This 2 minute video was utilized in the ROMP study, which assessed adult patient's attitudes toward research on medical practices in the context of 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.
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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]