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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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

Whole Genome Sequencing and You

Author(s): Sanderson, Saskia C., Suckiel, Sabrina A., Zweig, Micol, Bottinger, Erwin P., Jabs, Ethylin Wang, Richardson, Lynne D.
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
Citation:

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(5), 501–512.

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.
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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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CSER Phase 1: ClinSeq Study Brochure

Author(s): The ClinSeq Research Team
Year: 2015

This recruitment brochure for the ClinSeq Study provides details about the study rationale, the risks and benefits associated with participation, and the enrollment procedure.

Research Population: Adults
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CSER Phase 1: CanSeq Study Brochure

Author(s): Dana-Farber Cancer Institute
Year: 2015

This recruitment brochure for the CanSeq Study provides details about the study rationale and information designed to help adults weigh the risks and benefits associated with participation.

Research Population: Adults
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Genomics ADvISER

Author(s): Shickh, Salma, Rafferty, Sara A., Clausen, Marc, Kodida, Rita, Mighton, Chloe, Panchal, Seema, Lorentz, Justin, Ward, Thomas, Watkins, Nicholas, Elser, Christine, Eisen, Andrea, Carroll, June C., Glogowski, Emily, Schrader, Kasmintan A., Lerner-Ellis, Jordan, Kim, Raymond H., Chitayat, David, Shuman, Cheryl, Bombard, Yvonne, Incidental Genomics Study Team
Year: 2021

Genomics ADvISER is a digital decision aid for use in the delivery of genomic counseling. It is intended as a supplement to genomic counseling with a counselor.

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Genomics ADvISER is a digital decision aid for use in the delivery of genomic counseling. It is intended as a supplement to genomic counseling with a counselor. Genomics ADvISER guides users through a ten-minute video of basic genomic sequencing concepts and five categories of secondary findings followed by brief interactive questionnaires about values, knowledge, and decision-making needs. Please contact the authors of the study to use this tool.

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Research Population: Adults
Citation:

Shickh, S., Rafferty, S. A., Clausen, M., Kodida, R., Mighton, C., Panchal, S., & Bombard, Y., Lorentz, J., Ward, T., Watkins, N., Elser, C., Eisen, A., Carroll, J. C., Glogowski, E., Schrader, K. A., Lerner-Ellis, J., Kim, R. H., Chitayat, D., Shuman, C., Bombard, Y., and Incidental Genomics Study Team (2021). The role of digital tools in the delivery of genomic medicine: Enhancing patient-centered care. Genetics in Medicine, 23(6), 1-9.

Contact: [email protected]

Optional Results Choice Aid (ORCA)

Author(s): Freed, Amanda S., Gruß, Inga, McMullen, Carmit K., Leo, Michael C., Kauffman, Tia L., Porter, Kathryn M., Muessig, Kristin R., Eubanks, Donna, Goddard, Katrina A. B., Wilfond, Benjamin S., Liles, Elizabeth G.
Year: 2021

The Optional Results Choice Aid (ORCA) is a decision aid to support informed, values based decision-making for adult patients and research participants about the reciept of medically actionable, ad

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The Optional Results Choice Aid (ORCA) is a decision aid to support informed, values based decision-making for adult patients and research participants about the reciept of medically actionable, additional findings from genomic sequencing. ORCA will be implemented and evaluated in the NHGRI-funded Cancer Health Assessment Reaching Many (CHARM) study.

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Research Population: Adults
Citation:

Freed, A. S., Gruß, I., McMullen, C. K., Leo, M. C., Kauffman, T. L., Porter, K. M., Muessig, K. R., Eubanks, D., Goddard, K. A. B., Wilfond, B. S., & Liles, E. G. (2021). A decision aid for additional findings in genomic sequencing: Development and pilot testing. Patient Education and Counseling, 104(5), 960-968.

Contact: [email protected]
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Which Medication is Best? (Video), 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 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.

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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. The video explains the influences on variation in usual medical care and the uncertainty doctors have about usual medical 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.

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]
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Approaches to Research on Medical Practices (Video), 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 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.

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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. The video explains medical record review, randomization, and randomization of clinics and hospitals.

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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.

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]
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Informing or Asking (Video), 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 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.

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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. The video explains general information, verbal permission, and written agreement.

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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.

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]
View online source

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.

SHOW LESS
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]
View online source

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