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CSER Phase 2 Parental Patient Measures – BASELINE
This 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
CSER Phase 2 - Feelings about Genomic Testing Results (FACToR) – Parent
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.
CSER Phase 2 Parent Decliner Survey
This 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,
Preferences for the Return of Pediatric Biobank Results Survey
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.
CSER Phase 2 Patient Reported Utility (PRU) of Clinical Sequencing Survey
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)
CSER Phase 2 Patient-Initiated Actions Attributable to Genomic Testing (PIA) Survey
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
CSER Phase 2 Follow Through on Medical Actions Attributable to Genomic Testing (MRA) Survey
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
CSER Information Seeking Measure
The CSER Information Seeking Measure (two versions) is a single-item measure that assesses the sources of information that patients think they will be likely to use to obtain further information ab
CSER Phase 1: Informed Consent Form and HIPAA Authorization - PediSeq: The Pediatric Genetic Sequencing Project
The purpose of PediSeq: The Pediatric Genetic Sequencing Project was to identify best practices for educating patients about exome and genome sequencing, determining the sequencing data relevent to
CSER Phase 1: Consent Form - ClinSeq : A Large-Scale Medical Sequencing Clinical Research Pilot Study
This consent form for adult patients or parents of minor patients (with child assent) includes standard consent language and the ability for participants to “opt out” of learning about genome seque