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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 85 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.
Contact: [email protected] -
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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Misattributed Paternity Questionnaire
Year: 2017Lowe and colleagues developed a questionnaire containing two scenarios in which misattributed paternity is incidentally discovered, possible courses of action for the doctor in each scenario, and a
Research Population: AdultsContact: [email protected] -
Preferences Instrument for Genomic Secondary Results (PIGSR)
Year: 2017The PIGSR is a brief instrument that enables adult respondents the ability to express their preferences or opt out of getting secondary results.
Research Population: Adults -
Genetic Literacy and Comprehension (GLAC) Measure
Year: 2014Hooker and colleagues designed the Genetic Literacy and Comprehension (GLAC) measure to assess research participant familiarity with eight commonly used genetic terms and concepts (genetic, chromos
Research Population: Adults -
CSER Phase 2 Adult Patient Measures – BASELINE
Year: 2018This baseline measure for adults enables the collection of information on sex, age, language, income, education level, insurance status, country of origin, access to care, health literacy, subjecti
Research Population: Adults -
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 Adult Decliner Survey
Year: 2018This survey for study decliners captures demographic and insurance status information and elicits information about why participants declined to join the study such as privacy concerns, refusal to
Research Population: Adults -
CSER Phase 2 Parental Patient Measures – BASELINE
Year: 2018This baseline measure for parents enables the collection of information on sex, age, language, income, education level, insurance status, country of origin, access to care, health literacy, subject
Research Population: Parents -
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.