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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 71 Research Tools
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Genome Empowerment Scale (GEmS)
Year: 2019The GEmS can be used to assess the genomic healthcare empowerment of parents (e.g., the meaning of a diagnosis for their child, emotional management of the process, their confidence in utilizing th
Research Population: ParentsValidation(s):- McConkie-Rosell, A., Schoch, K., Sullivan, J., Spillmann, R. C., Cope, H., Tan, Q. K.-G., Palmer, C. G. S., Undiagnosed Disease Network,, Hooper, S. R., & Shashi, V. (2021). Clinical application of a scale to assess genomic healthcare empowerment (GEmS): Process and illustrative case examples. Journal of Genetic Counseling. Epub ahead of print.
- McConkie-Rosell, A., Schoch, K., Sullivan, J., Cope, Heidi, Spillmann, R. C., Palmer, C. G. S., Pena, Loren, Jiang, Y., Daniels, N., Walley, N., Tan, K. G., Undiagnosed Diseases Network, Hooper, S. R., Shashi, V. (2019). The Genome Empowerment Scale (GEmS): An assessment of parental empowerment in families with undiagnosed diseases. Clinical Genetics, 96(6), 521-531.
Contact: [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.
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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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Introduction to Precision Medicine Research (Video), The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research
Year: 2018This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process of precision medicine research.
Research Population: AdultsContact: [email protected] -
Setting up a Biorepository (Video), The VALUES Project, The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research
Year: 2018This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process of precision medicine research.
Research Population: AdultsContact: [email protected] -
Uses of Data in Precision Medicine Research (Video), The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research
Year: 2018This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process of precision medicine research.
Research Population: AdultsContact: [email protected] -
Security and Privacy (Video), The VALUES Project, The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research
Year: 2018This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process of precision medicine research.
Research Population: AdultsContact: [email protected] -
Consent (Video), The VALUES Project, The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research
Year: 2018This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process of precision medicine research.
Research Population: AdultsContact: [email protected] -
Oversight (Video), The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research
Year: 2018This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process of precision medicine research.
Research Population: AdultsContact: [email protected]