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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 - 7 of 7 Research Tools
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Whole Genome Sequencing and You
Year: 2016“Whole Genome Sequencing and You” is a 10-minute educational animated video about whole-genome sequencing for research participants, patients, and the general public.
Research Population: AdultsValidation(s):- Sanderson, Saskia S., Suckiel, Sabrina A., Zweig, Micol, Bottinger, Erwin P., Jabs, Ethylin Wang, & Richardson, Lynne D. (2016). Development and preliminary evaluation of an online educational video about whole-genome sequencing for research participants, patients, and the general public. Genet Med 18, 501–512.
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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.
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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] -
Approaches to Research on Medical Practices (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.
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Informing or Asking (Video), Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2015This 2 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.
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Consent Form, All of Us Research Program
Year: 2021This consent form is utilized by the All of Us Research Program (All of Us), a health research program, funded by the National Institutes of Health, that will study health data from over one millio
Research Population: AdultsValidation(s):- Doerr, M., Moore, S., Barone, V., Sutherland, S., Bot, B. M., Suver, C., & Wilbanks, J. (2021). Assessment of the All of Us research program's informed consent process. AJOB Empirical Bioethics, 12(2), 72–83.
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HIPAA Authorization for Research–Electronic Health Record Supplement, All of Us Research Program
Year: 2018This form includes information for participants and collects a consent for the the All of Us Research Program (All of Us) to access to their electronic health records.
Research Population: AdultsValidation(s):- Doerr, M., Moore, S., Barone, V., Sutherland, S., Bot, B. M., Suver, C., & Wilbanks, J. (2021). Assessment of the All of Us research program's informed consent process. AJOB Empirical Bioethics, 12(2), 72–83.