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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 20 Research Tools
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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.
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CSER Phase 2 Parent Decliner Survey
Year: 2018This 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,
Research Population: Parents -
Preferences for the Return of Pediatric Biobank Results Survey
Year: 2017Christensen 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
Research Population: Parents -
CSER Phase 2 Patient-Initiated Actions Attributable to Genomic Testing (PIA) Survey
Year: 2019The 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
Research Population: Adults, Parents -
CSER Phase 2 Follow Through on Medical Actions Attributable to Genomic Testing (MRA) Survey
Year: 2019The 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
Research Population: Parents -
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
Research Population: Adults, Parents -
CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3 Study)
Parent QuestionnaireThis questionnaire for parents was developed for the BASIC3 study.
Research Population: Parents -
CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3 Study) Family History Questionnaire
This questionnaire was developed for the BASIC3 study. It collects a detailed family history of cancer from parents about their child.
Research Population: Parents -
CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3 Study)
Child Health QuestionnaireThis questionnaire was developed for use in the BASIC3 study. It collects demographic and health information from parents about their child.
Research Population: Parents