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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 - 8 of 8 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 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 -
Attitudes of Parents of Sickle Cell Anemia (SCA) Affected Children Toward Prenatal Diagnosis of SCA Survey
Year: 2011Wonkam and colleagues designed this survey to gather information about how Cameroonian parents with SCA-affected children feel towards prenatal diagnosis and termination of an affected pregnancy.
Research Population: ParentsContact: [email protected] -
The Parental Personal Utility Scale (Parent PrU)
Year: 2024The Personal Utility Scale (PrU) asks participants to rate how useful they find nineteen outcomes of genome sequencing on a scale ranging from 1 (not at all useful) to 7 (extremely useful).
Research Population: Adults, ParentsValidation(s):Turbitt, E., Kohler, J. N., Brothers, K. B., Outram, S. M., Rini, C., Sahin-Hodoglugil, N., Leo, M. C., & Biesecker, B. B. (2024) The Parent PrU: A measure to assess personal utility of pediatric genomic results. Genetics in Medicine, 16(1), Article 100994.
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