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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 - 10 of 17 Research Tools
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Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS)
Year: 2009Peshkin and colleagues developed and tested the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS) to assess parental attitudes about and interest in testing their minor children for BRCA 1/2 mutati
Research Population: AdultsValidation(s):- Peshkin, B. N., Demarco, T. A., Garber, J. E., Valdimarsdottir, H. B., Patenaude, A. F., Schneider, K. A., Schwartz, Marc D., & Tercyak, K. P. (2009). Brief assessment of parents' attitudes toward testing minor children for hereditary breast/ovarian cancer genes: Development and validation of the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS). Journal of Pediatric Psychology, 34(6), 627-638.
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Feelings About genomiC Testing Results (FACToR) Questionnaire
Year: 2018This post-return of genetic test results survey assesses the psychosocial impact of receiving genomic findings by measuring how much participants had specific feelings such as anxiousness, nervousn
Research Population: AdultsValidation(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 - 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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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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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 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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Manual for Deliberative Focus Group Discussions (dFGDs) on Feedback of Individual Findings in Genomic Research among Lay Individuals who have Participated in Genomics Research
Year: 2019The Manual for Deliberative Focus Group Discussions (dFGDs) on Feedback of Individual Findings in Genomic Research was originally developed for use among adults and adolescents enrolled in genomics
Research Population: AdultsContact: [email protected] -
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.
Contact: [email protected]