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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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
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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: Adults
Validation(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.
Instrument for assessing mass media reporting of disease-related genetic discoveries
Year: 2002
Instrument 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/A
Validation(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.
Which Medication is Best? (Video), Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2015
This 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: Adults
Validation(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: 2015
This 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: Adults
Validation(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]
Informing or Asking (Video), Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2015
This 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: Adults
Validation(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]
Plain Text Script, Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2015
This 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: Adults
Contact: [email protected]
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: 2018
This 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: Adults
Contact: [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: 2018
This 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: Adults
Contact: [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: 2018
This 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: Adults
Contact: [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: 2018
This 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: Adults
Contact: [email protected]