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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.

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My46: A Web-based Tool for Self-guided Management of Genomic Test Results

Author(s): Tabor, Holly K., Jamal, Seema M., Yu, Joon-Ho, Crouch, Julia M., Shankar, Aditi G., Dent, Karin M., Anderson, Nick, Miller, Damon A., Futral, Brett T., Bamshad, Michael J.
Year: 2017

Tabor and colleagues developed My46, a self-guided, web-based information management system for individuals undergoing genetic testing in clinical and research settings, to enable them to choose wh

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Tabor and colleagues developed My46, a self-guided, web-based information management system for individuals undergoing genetic testing in clinical and research settings, to enable them to choose whether and when to receive their results while maintaining data security and confidentiality. No charge licenses are available to academic and nonprofit research organizations.

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Research Population: Adults
Citation:

Tabor, H. K., Jamal, S. M., Yu, J., Crouch, J. M., Shankar, A. G., Dent, K. M., Anderson, N., Miller, D. A., Futral, B. T., Bamshad, M. J. (2017). My46: a Web-based tool for self-guided management of genomic test results in research and clinical settings. Genetics in Medicine, 19(4), 467-475.

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Instrument for assessing mass media reporting of disease-related genetic discoveries

Author(s): Mountcastle-Shah, Eliza, Tambor, Ellen, Bernhardt, Barbara A., Geller, Gail, Karaliukas, Reda, Rodgers, Joann Ellison, Holtzman, Neil A.
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

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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 to human disease.

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Research Population: N/A
Citation:

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.

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.
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Assessment of Strategic Integration of Genomics across Nursing (ASIGN) Maturity Matrix

Author(s): Tonkin, Emma, Calzone, Kathleen A., Badzek, Laurie, Benjamin, Caroline, Middleton, Anna, Patch, Christine, Kirk, Maggie, Nur, Dip
Year: 2020

The 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

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The 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 organization on the integration of genomics into nursing.

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Research Population: Adults
Citation:

Tonkin, E., Calzone, K. A., Badzek, L., Benjamin, C., Middleton, A., Patch, C., Kirk, M., & Nur, D.
(2020). A maturity matrix for nurse leaders to facilitate and benchmark progress in genomic healthcare policy, infrastructure, education, and delivery. Journal of Nursing Scholarship, 52(5), 583-592.

Contact: [email protected]

Plain Text Script, Attitudes about the Ethics of Research on Medical Practices (RoMP)

Author(s): Kelley, Maureen, James, Cyan, Kraft, Stephanie Alessi, Korngiebel, Diane, Wijangco, Isabelle, Rosenthal, Emily, Joffee, Steven, Cho, Mildred K., Wilfond, Benjamin, Lee, Sandra Soo-Jin
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

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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 the context of usual care.

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Research Population: Adults
Citation:

Kelley, M., James, C., Alessi Kraft, S., Korngiebel, D., Wijangco, I., Rosenthal, E., Joffe, S., Cho, M. K., Wilfond, B., Lee, S. S. (2015). Patient perspectives on the learning health system: The importance of trust and shared decision making. Am J Bioeth, 15(9), 4-17.

Contact: [email protected]
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