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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 69 Research Tools
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CSER Phase 2 - Feelings about Genomic Testing Results (FACToR) – Parent
Year: 2018This post-return of child genetic test results survey for parents assesses the psychosocial impact of receiving genomic findings by measuring how much participants had specific feelings such as anx
Research Population: ParentsValidation(s):- Li, M., Bennette, C. S., Amendola, L. M., Ragan Hart, M., Heagerty, P., Comstock, B., Tarczy-Hornoch, P., Fullerton, S. M., Regier, D. A., Burke, W., Trinidad, S. B., Jarvik, Gail P., Veenstra, D. L., Patrick, D. L. (2019). The feelings about genomiC testing results (FACToR) questionnaire: development and preliminary validation. Journal of Genetic Counseling, 28(2), 477-490.
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CSER Phase 2 Parent Decliner Survey
Year: 2018This survey for study decliners captures demographic and insurance status information and elicits information about why parents declined to enroll their child in the study such as privacy concerns,
Research Population: Parents -
Site Specific Tools for Participant Choices for Return of Genomic Results in the eMERGE Network
Year: 2020Several 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
Research Population: Adults -
Preferences for the Return of Pediatric Biobank Results Survey
Year: 2017Christensen and colleagues developed a survey to enable parents of pediatric patients to set preferences for return of individual results from research on pediatric biobank samples based on disease
Research Population: Parents -
Subjective Numeracy Scale (SNS)
Year: 2007Fagerlin and colleagues developed the Subjective Numeracy Scale (SNS) to distinguish low- and high quantitative ability individuals for use with patients that need to understand the risks of medica
Research Population: AdultsValidation(s):- Zikmund-Fisher, B. J., Smith, D. M., Ubel, P. A., Fagerlin, A. (2007). Validation of the Subjective Numeracy Scale: effects of low numeracy on comprehension of risk communications and utility elicitations. Med Decis Making, 27(5), 663–671.
- McNaughton, C. D., Cavanaugh, K. L., Kripalani, S., Rothman, R. L., Wallston, K. A. (2015). Validation of a Short, 3-Item Version of the Subjective Numeracy Scale. Med Decis Making, 35(8), 932–936.
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Health Care System Distrust Scale
Year: 2004Rose and colleagues developed a 10-item scale to measure distrust of the United States healthcare system (defined as hospitals, health insurance companies, and medical research) for use in the inve
Research Population: AdultsValidation(s):- Rose, A., Peters, N., Shea, J. A., & Armstrong, K. (2004). Development and testing of the health care system distrust scale. Journal of general internal medicine, 19(1), 57-63.
- Shea, J. A., Micco, E., Dean, L. T., McMurphy, S., Schwartz, J. S., & Armstrong, K. (2008). Development of a revised Health Care System Distrust scale. J Gen Intern Med., 23(6), 727–732.
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SF-12 Health Survey
Year: 1996Ware and colleagues developed the SF-12, a shortened version of the 36-item short-form (SF-36) health survey, to measure physical and mental health in studies with large samples or constraints on q
Research Population: AdultsValidation(s):- Ware Jr., J. E., Kosinski, M., Keller, S. D. (1996). A 12-item short-form health survey: Construction of scales and preliminary tests of reliability and validity. Medical care, 34(3), 220-233.
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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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CSER Phase 2 Patient-Initiated Actions Attributable to Genomic Testing (PIA) Survey
Year: 2019The 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
Research Population: Adults, Parents -
CSER Phase 2 Follow Through on Medical Actions Attributable to Genomic Testing (MRA) Survey
Year: 2019The Follow Through on Medical Actions Attributable to Genomic Testing Survey, developed by the Clinical Utility, Health Economics, and Policy (CUHEP) working group, measures whether parents of pedi
Research Population: Parents