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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
21 - 28 of 28 Research Tools
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Scenarios for Ethical and Legal Analysis of Genomic Data Sharing Practices
Year: 2020McWhirter and colleagues report the development and validation of 6 scenarios based on actual genomic data sharing pratices in Australia.
Research Population: AdultsValidation(s):McWhirter, R., Eckstein, L., Chalmers, D., Critchley, C., Nielsen, J., Otlowski, M., & Nicol, D. (2020). A scenario-based methodology for analyzing the ethical, legal, and social issues in genomic data sharing. Journal of Empirical Research on Human Research Ethics, 15(4), 355-364.
Contact: [email protected] -
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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REVEAL Impact of Genetic Testing in Alzheimer’s Disease (IGT-AD) Scale
Year: 2010Chung and colleagues created the REVEAL Impact of Genetic Testing in Alzheimer’s Disease (IGT-AD) Scale to measure psychological impact of genetic susceptibility testing for Alzheimer disease (AD).
Research Population: AdultsValidation(s):- Chung, W, W., Chen, C. A., Cupples, L. A., Roberts, J. Scott, Hiraki, S. C., Nair, A. K., Green, R. C., & Stern, R. A. (2009). A new scale measuring psychologic impact of genetic susceptibility testing for Alzheimer disease. Alzheimer Disease & Associated Disorders, 23(1), 50-56.
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Consent Form, All of Us Research Program
Year: 2021This consent form is utilized by the All of Us Research Program (All of Us), a health research program, funded by the National Institutes of Health, that will study health data from over one millio
Research Population: AdultsValidation(s):- Doerr, M., Moore, S., Barone, V., Sutherland, S., Bot, B. M., Suver, C., & Wilbanks, J. (2021). Assessment of the All of Us research program's informed consent process. AJOB Empirical Bioethics, 12(2), 72–83.
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HIPAA Authorization for Research–Electronic Health Record Supplement, All of Us Research Program
Year: 2018This form includes information for participants and collects a consent for the the All of Us Research Program (All of Us) to access to their electronic health records.
Research Population: AdultsValidation(s):- Doerr, M., Moore, S., Barone, V., Sutherland, S., Bot, B. M., Suver, C., & Wilbanks, J. (2021). Assessment of the All of Us research program's informed consent process. AJOB Empirical Bioethics, 12(2), 72–83.
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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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Perceived Caregiving Interactions and Behaviors: Malfeasance, Nonfeasance, and Uplift Scales
Year: 2023The Perceived Caregiving Interactions and Behaviors: Malfeasance, Nonfeasance, Uplift Scales are used to examine whether levels of nonfeasance, malfeasance, and uplift are associated with the…
Research Population: AdultsValidation(s):Ashida, S., Marcum, C. S., & Koehly, L. M. (2017). Unmet expectations in Alzheimer’s family caregiving: Interactional characteristics associated with perceived under-contribution. The Gerontologist, 58(2), e46–e55.
Koehly, L. M., Ashida, S., Sumrall, S., & Hyman, S. (2023). Caregiving interactions and behaviors in the care of children with rare genetic or undiagnosed conditions. Journal of Child and Family Studies, 32, 3501–3514.
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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.
Contact: [email protected]