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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 - 7 of 7 Research Tools
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The Colored, Eco-Genetic Relationship Map (CEGRM)
Year: 2001Kenen and Preters designed the Colored Ecological and Genetic Relational Map (CEGRM), a pictoral map used to organize information about client relationships with biological and non-biological kin,
Research Population: AdultsValidation(s):Peters, J. A., Kenen, R., Giusti, R., Loud, J., Weissman, N., & Greene, M. H. (2004). Exploratory study of the feasibility and utility of the colored eco-genetic relationship map (CEGRM) in women at high genetic risk of developing breast cancer. Am J Med Genet Part A, 130A, 258–264.
Peters, J. A., Hoskins, L., Prindiville, S., Kenen, R., & Greene, M. H. (2006). Evolution of the colored eco-genetic relationship map (CEGRM) for assessing social functioning in women in hereditary breast-ovarian (HBOC) families. Journal of Genetic Counseling, 15(6), 477-489.
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Genetic Literacy Survey
Year: 2015Abrams 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
Research Population: AdultsValidation(s):- 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.
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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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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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