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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
51 - 60 of 202 Research Tools
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CSER Phase 1: Personalized Medicine Based on Molecular Profiling of Pediatric and Young Adult Patients with Cancer Study Protocol
Year: 2015The Personalized Medicine Based on Molecular Profiling of Patients with Cancer implements a mechanism for patients who have advanced or refractory cancer to undergo tumor sequencing, sequence analy
Research Population: Adults -
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 -
Genomics ADvISER
Year: 2021Genomics ADvISER is a digital decision aid for use in the delivery of genomic counseling. It is intended as a supplement to genomic counseling with a counselor.
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 -
Manual for Deliberative Focus Group Discussions (dFGDs) on Feedback of Individual Findings in Genomic Research among Lay Individuals who have Participated in Genomics Research
Year: 2019The Manual for Deliberative Focus Group Discussions (dFGDs) on Feedback of Individual Findings in Genomic Research was originally developed for use among adults and adolescents enrolled in genomics
Research Population: AdultsContact: [email protected] -
Assessment of Strategic Integration of Genomics across Nursing (ASIGN) Maturity Matrix
Year: 2020The Assessment of Strategic Integration of Genomics across Nursing (ASIGN) maturity matrix (MM) is a self-assessment tool that enables users to asesses the progress of their country, city, or organ
Research Population: AdultsContact: [email protected] -
Optional Results Choice Aid (ORCA)
Year: 2021The Optional Results Choice Aid (ORCA) is a decision aid to support informed, values based decision-making for adult patients and research participants about the reciept of medically actionable, ad
Research Population: AdultsContact: [email protected] -
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] -
Which Medication is Best? (Video), Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2015This 3 minute video was utilized in the ROMP study, which assessed adult patient's attitudes toward research on medical practices in the context of 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]