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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 - 10 of 58 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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Instrument for assessing mass media reporting of disease-related genetic discoveries
Year: 2002Instrument 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/AValidation(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.
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CSER Phase 1: Tumor Mutation Explanation Card
Year: 2012This short explanation card defines a tumor mutation and describes what parents of pediatric patients can expect from a tumor mutation report.
Research Population: Parents -
CSER Phase 1: Inherited Mutation Explanation Card
Year: 2012This short explanation card defines an inherited mutation and describes the information that parents might find on their child's inherited mutation report.
Research Population: Parents -
CSER Phase 1: X-Linked Explanation Card
Year: 2013This short explanation card defines carrier status for X-linked recessive conditions.
Research Population: Parents -
CSER Phase 1: Revised Carrier Status Explanation Card
Year: 2012This hort explanation card defines carrier status for recessive genetic conditions.
Research Population: Parents -
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.
Contact: [email protected] -
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.
Contact: [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]