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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
21 - 30 of 87 Research Tools
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The Personal Utility Scale (PrU)
Year: 2023The 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)
Research Population: AdultsValidation(s):Turbitt, E., Kohler, J. N., Angelo, F., Miller, I. M., Lewis, K. L., Goddard, K. A. B., Wilfond, B. S, Biesecker, B. B., & Leo, M. C. (2023) The PrU: Development and validation of a measure to assess personal utility of genomic results. Genetics in Medicine, 25(3), 100356.
Contact: [email protected] -
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 -
Making improvements in hospital care survey
Year: 2016The Making Improvements in Hospital Care Survey is a 32-item survey instrument designed to measure patient preferences for consent to non-invasive, quality improvement interventions in the hospital
Research Population: AdultsValidation(s):- Kaplan, S. H., Gombosev, A., Fireman, S., Sabin, J., Heim, L., Shimelman, L., Kaganov, R., Osann, K., Tjoa, T. & Huang, S. S. (2016). The patient's perspective on the need for informed consent for minimal risk studies: Development of a survey-based measure. AJOB Empirical Bioethics, 7(2), 116-124.
Contact: [email protected] -
Genetic Essentialism Scale for Race (GESR)
Year: 2019The Genetic Essentialism Scale for Race (GESR) measures beliefs about the relationship between genes and race with 15 items.
Research Population: AdultsValidation(s):- Yaylacı, Ş., Roth, W. D., & Jaffe, K. (2019). Measuring racial essentialism in the genomic era: The genetic essentialism scale for race (GESR). Current Psychology, 1-15.
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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: ClinSeq Study Brochure
Year: 2015This recruitment brochure for the ClinSeq Study provides details about the study rationale, the risks and benefits associated with participation, and the enrollment procedure.
Research Population: Adults -
CSER Phase 1: CanSeq Study Brochure
Year: 2015This recruitment brochure for the CanSeq Study provides details about the study rationale and information designed to help adults weigh the risks and benefits associated with participation.
Research Population: Adults -
CSER Phase 1: MIONCOSEQ Study Patient Vignettes
These patient vignettes, based on the experiences of real participants in the Michigan Oncology Sequencing Center (MI-ONCOSEQ) DNA sequencing study, help adults understand what to expect should the
Research Population: Adults -
CSER Phase 1: Incidental Findings Choice Document
Year: 2015This questionnaire enables research participants to review categories of incidental findings that might be revealed during an exome test and select the categories of results that they would like to
Research Population: Adults