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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
11 - 20 of 68 Research Tools
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Site Specific Tools for Participant Choices for Return of Genomic Results in the eMERGE Network
Year: 2020Several study sites in the third phase of the electronic MEdical Records and GEnomics (eMERGE) Network implemented protocols to enable research participants to choose the type of secondary results
Research Population: Adults -
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 -
Questionnaire: “Data in question. ELSI Challenges in Biobank-based Research”
Year: 2019Goisef and colleagues developed a survey for professionals working in research-based biobanks in Europe that assess their satisfaction with current ELSI-related procedures.
Research Population: ResearchersContact: [email protected] -
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] -
Instrument for assessing mass media reporting of disease-related genetic discoveries
Year: 2002Instrument for assessing mass media reporting of disease-related genetic discoveries is a 38-item tool for evaluating the quality and balance of media stories reporting genetic discoveries related
Research Population: N/AValidation(s):- Mountcastle-Shah, E., Tambor, E., Bernhardt, B. A., Geller, G., Karaliukas, R., Rodgers, J. E., & Holtzman, N. A. (2003). Assessing mass media reporting of disease-related genetic discoveries: Development of an instrument and initial findings. Science Communication, 24(4), 458-478.
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Genetic Literacy Fast Test (GeneLiFT)
Year: 2020The Genetic Literacy Fast Test (GeneLiFT) is a self-administered genetic literacy test for individuals who intend to undergo genetic screening with return of results.
Research Population: AdultsValidation(s):- Rasouly, M. H., Cuneo, N., Marasa, M., DeMaria, N., Chatterjee, D., Thompson, J. J., Fasel, D. A., Wynn, J., Chung, W., Appelbaum, P., Weng, C., Bakken, S., & Gharavi, A. G. (2020). GeneLiFT: A novel test to facilitate rapid screening of genetic literacy in a diverse population undergoing genetic testing. Journal of Genetic Counseling, 00, 1–13.
Contact: [email protected] -
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