The Research Tools database facilitates access to commonly used instruments for empirical ELSI scholarship.
This 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
- 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.
The CSER Organizational Readiness to Change Assessment measures the readiness of healthcare systems to implement clinical sequencing.
CSER Phase 2 Provider Return of Results Follow-up #1 Survey is administered 0-6 weeks post-return of results to providers of research participants that were returned positive, negative, VUS, and se
CSER Phase 2 Provider Return of Results Follow-up #2 Survey is administered at 5-7 months post-return of results, regardless of whether the provider has completed the CSER Phase 2 Provider Return o
Several 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
Christensen 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
Fagerlin 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
- 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.