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.
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
Christensen, K. D., Savage, S. K., Huntington, N. L., Weitzman, E. R., Ziniel, S. I., Bacon, P. L., Cacioppo, C. N., Green, R. C. & Holm, I. A. (2017). Preferences for the return of individual results from research on pediatric biobank samples. Journal of Empirical Research on Human Research Ethics, 12(2), 97-106.
The 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)
The 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
The 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
This short explanation card defines a tumor mutation and describes what parents of pediatric patients can expect from a tumor mutation report.