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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 - 19 of 19 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.
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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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15-Item 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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Trust in Medical Researchers (Full and Short Scales)
Year: 2006Hall and colleagues report the development and validation of 12-item survey and a short form (4-item) survey designed to measure trust in medical researchers.
Research Population: AdultsValidation(s):- Cunningham-Erves, J., Villalta-Gil, V., Wallston, K. A., Boyer, A. P., & Wilkins, C. H. (2019). Racial differences in two measures of trust in biomedical research. Journal of clinical and translational science, 3(2-3), 113-119.
- Hall, M. A., Camacho, F., Lawlor, J. S., DePuy, V., Sugarman, J., & Weinfurt, K. (2006). Measuring trust in medical researchers. Medical care, 44(11), 1048-1053.
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Trust in Medical Researchers Scale
Year: 2006Mainous and colleagues report the development and validation of the 12-item Trust in Medical Resesearchers Scale. This scale is designed to be self-administered.
Research Population: AdultsValidation(s):- Cunningham-Erves, J., Villalta-Gil, V., Wallston, K. A., Boyer, A. P., & Wilkins, C. H. (2019). Racial differences in two measures of trust in biomedical research. Journal of clinical and translational science, 3(2-3), 113-119.
- Mainous, A. G., Smith, D. W., Geesey, M. E., & Tilley, B. C. (2006). Development of a measure to assess patient trust in medical researchers. The Annals of Family Medicine, 4(3), 247-252.
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The IntegratedEthics Staff Survey™ (IESS)
Year: 2013This survey, created by Pearlman and colleagues, measures the attitudes of staff towards ethical practices in multiple areas of a healthcare organizations.
Research Population: AdultsValidation(s):- Pearlman, R. A., Bottrell, M. M., Altemose, J., Foglia, M. B., & Fox, E. (2013). The IntegratedEthicsTM Staff Survey: A tool to evaluate and improve ethical practices in health care. AJOB Primary Research, 4(1), 7-19.
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The Parental Personal Utility Scale (Parent PrU)
Year: 2024The Personal Utility Scale (PrU) asks participants to rate how useful they find nineteen outcomes of genome sequencing on a scale ranging from 1 (not at all useful) to 7 (extremely useful).
Research Population: Adults, ParentsValidation(s):Turbitt, E., Kohler, J. N., Brothers, K. B., Outram, S. M., Rini, C., Sahin-Hodoglugil, N., Leo, M. C., & Biesecker, B. B. (2024) The Parent PrU: A measure to assess personal utility of pediatric genomic results. Genetics in Medicine, 16(1), Article 100994.
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Hierarchical Mapping Technique
Year: 1986The Hierarchical Mapping Technique, best described in the measures section of the validation included here, enables the collection of information about social network structure using a concentric…
Research Population: AdultsValidation(s):Antonucci, T. C., Ajrouch, K. J., & Webster, N. J. (2019). Convoys of social relations: Cohort similarities and differences over 25 years. Psychology and Aging, 34(8), 1158-1169.
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