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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 67 Research Tools
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Common survey items, eMERGE participant survey at 0-1 month post disclosure
Year: 2018This survey covers disclosure of genetic test results to family members, plans for follow up care, plans for behavior changes, demographic information, and other topics.
Research Population: Adults -
Common survey items, eMERGE participant survey at 6-12 months post disclosure
Year: 2018This survey covers disclosure of genetic test results to family members, follow up care, behavior changes, and other topics. It can be administered using REDCap.
Research Population: Adults -
CSER Phase 2 Organizational Readiness to Change Assessment
Year: 2018The CSER Organizational Readiness to Change Assessment measures the readiness of healthcare systems to implement clinical sequencing.
Research Population: Adults -
General Population and Patient Survey, Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2017This self-administered, web-based survey using an experimental between-group design to compare the effects of four informational aids on respondents’ understanding of core aspects of research on me
Research Population: AdultsContact: [email protected] -
IRB Member Focus Group Guide, Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2017This focus group guide assesses the perspectives of IRB professionals toward research on medical practices within usual care.
Research Population: IRB ProfessionalsContact: [email protected] -
Patient Focus Group Guide, Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2015This focus group guide assesses patient attitudes toward research on medical practices within usual care.
Research Population: AdultsValidation(s):- Kraft, S. A., Constantine, M., Magnus, D., Porter, K. M., Lee, S. S. J., Green, M., Kass, N. E., Wilfond, B. S., Cho, M. K. (2017). A randomized study of multimedia informational aids for research on medical practices: Implications for informed consent. Clinical Trials, 14(1), 94-102.
Contact: [email protected] -
PRIM&R Member Survey, Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2016The PRIM&R Member Survey was used in the ROMP study to elicit the perspectives of a random selection of human subjects research professionals from the Public Responsibility in Medicine and Rese
Research Population: AdultsContact: [email protected] -
Survey Instrument, Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2015The survey begins with questions about attitudes toward research, physicians, and health systems, interspersed with the 3 videos and questions to assess understanding of ROMP concepts.
Research Population: AdultsContact: [email protected] -
Plain Text Script, Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2015This plain text script includes descriptions of the three animated videos that were utilized in the ROMP study, which assessed adult patient's attitudes toward research on medical practices in
Research Population: AdultsContact: [email protected] -
CSER Phase 2 Organizational Readiness to Change Assessment
Year: 2018The CSER Organizational Readiness to Change Assessment measures the readiness of healthcare systems to implement clinical sequencing.
Research Population: Adults