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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.

Search

Refine Your Search:

Document Type

Research Population

Validated

271 - 280 of 282 Research Tools

Search Help

  • Data Dictionary: Meaning of Screening

    Author(s): Erin Rothwell
    Year: 2015

    This project developed and evaluated the efficacy of a game decision aid among pregnant women about prenatal screening in a randomized controlled study.

    This project developed and evaluated the efficacy of a game decision aid among pregnant women about prenatal screening in a randomized controlled study. The data dictionary for this study outlines the structure, content, and variable definitions for the dataset.

    University of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037

    Research Population: Parents
    View online source

  • Data Dictionary: UCEER - SDSU Mapping the Genetics Communication Circuit

    Author(s): Heather Canary
    Year: 2020

    This project brought together health communication experts with diverse areas of expertise to investigate connections among clinical encounters, family decision making conversations, and informatio

    This project brought together health communication experts with diverse areas of expertise to investigate connections among clinical encounters, family decision making conversations, and information networks. The data dictionary for this study outlines the structure, content, and variable definitions for the dataset.

    University of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037

    Research Population: Genetic Health Professionals
    View online source

  • Data Dictionary: Utah Genome Project - Informed Consent

    Author(s): Jeff Botkin
    Year: 2016

    This project evaluated simplified tools used to inform the public around the consent process.

    This project evaluated simplified tools used to inform the public around the consent process. The data dictionary for this study outlines the structure, content, and variable definitions for the dataset.

    University of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037

    Research Population: General public
    View online source

  • Data Dictionary: Video Informed Consent Information (VICI) for Residual Newborn Specimen Research

    Author(s): Erin Rothwell
    Year: 2018

    Rothwell and colleagues developed a video and an app for obtaining consent about allowing newborn blood spots (NBS) to be used as biospecimen resources for biobanking.

    Rothwell and colleagues developed a video and an app for obtaining consent about allowing newborn blood spots (NBS) to be used as biospecimen resources for biobanking. They conducted focus groups and interviews with three diverse communities to determine (a) how well the consent tools worked and (b) participant familiarity with NBS. The data dictionary for this study outlines the structure, content, and variable definitions for the dataset.

    University of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037

    Research Population: General public
    View online source

  • Data Dictionary: Willingness to Pay (WTP)

    Author(s): Erin Rothwell
    Year: 2015

    Rothwell and colleagues used a willingness to pay (WTP) survey to evaluate the values individuals place on the information provided by a genetic counseling consultation providing incidental finding

    Rothwell and colleagues used a willingness to pay (WTP) survey to evaluate the values individuals place on the information provided by a genetic counseling consultation providing incidental findings for cancer causing genes. The data dictionary for this study outlines the structure, content, and variable definitions for the dataset.

    University of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037

    Research Population: General public
    View online source

  • Data Dictionary: ENLITE - Evaluating the Benefits and Limitations of Next Generation DTC

    Author(s): Madison Kilbride
    Year: 2023

    Kilbride and colleagues developed this data dictionary for the ENLITE Study. The ENLITE study explored public perceptions and knowledge of direct-to-consumer genetic testing.

    Kilbride and colleagues developed this data dictionary for the ENLITE Study. The ENLITE study explored public perceptions and knowledge of direct-to-consumer genetic testing. The data dictionary for this study outlines the structure, content, and variable definitions for the dataset.

    University of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037

    Research Population: General public
    View online source

  • Genomic Utility Valuation (GUV) Scale

    Author(s): Goranitis, I., Sheen, D., Fehlberg, Z., Mallett, A. J., Best, S., Stark, Z.
    Year: 2024

    Goranitis and colleagues developed the genomic utility valuation (GUV) scale to enable a standardized measurement and scoring of genomic utility based on 5 key policy priority indicators: clinical,

    Goranitis and colleagues developed the genomic utility valuation (GUV) scale to enable a standardized measurement and scoring of genomic utility based on 5 key policy priority indicators: clinical, diagnostic, economic, societal, and family utility.

    Research Population: Adults
    Citation:

    Goranitis, I., Sheen, D., Fehlberg, Z., Mallett, A. J., Best, S., & Stark, Z. (2025). A standardized measurement and valuation scale of genomic utility for policy decisions: The GUV scale. Value in Health, 28(2), 184–190.

    Contact: [email protected]
    View online source

  • GENEtic Utility (GENE-U) Scale

    Author(s): Smith, H. S., Rubanovich, C. K., Robinson, J. O., Levchenko, A. N., Classen, S. A., Malek, J., Buchanan, A. H., Biesecker, B., Brothers, K. B., Wilfond, B. S., Rini, C., Bloss, C. S., McGuire, A. L., Knight, S. J.
    Year: 2024

    Smith and colleagues developed the GENEtic Utility (GENE-U) scale to assess the perceived utility of genetic screening from the perspective of those who are undergoing risk-based or population-…

    Smith and colleagues developed the GENEtic Utility (GENE-U) scale to assess the perceived utility of genetic screening from the perspective of those who are undergoing risk-based or population-based screening via genetic screening.

    Research Population: Adults, Children
    Citation:

    Smith, H. S., Rubanovich, C. K., Robinson, J. O., Levchenko, A. N., Classen, S. A., Malek, J., Buchanan, A. H., Biesecker, B., Brothers, K. B., Wilfond, B. S., Rini, C., Bloss, C. S., McGuire, A. L., & Knight, S. J. (2024). Measuring perceived utility of genomic sequencing: Development and validation of the GENEtic Utility (GENE-U) scale for adult screening. Genetics in Medicine, 26(11), Article 101240.

    Validation(s):

    • Smith, H. S., Rubanovich, C. K., Robinson, J. O., Levchenko, A. N., Classen, S. A., Malek, J., Buchanan, A. H., Biesecker, B., Brothers, K. B., Wilfond, B. S., Rini, C., Bloss, C. S., McGuire, A. L., & Knight, S. J. (2024). Measuring perceived utility of genomic sequencing: Development and validation of the GENEtic Utility (GENE-U) scale for adult screening. Genetics in Medicine, 26(11), Article 101240.

    • Smith, H. S., Rubanovich, C. K., Robinson, J. O., Levchenko, A. N., Classen, S. A., Malek, J., Biesecker, B., Brothers, K. B., Wilfond, B. S., Rini, C., Knight, S. J., McGuire, A. L., & Bloss, C. S. (2024). Measuring perceived utility of genomic sequencing: Development and validation of the GENEtic Utility (GENE-U) scale for pediatric diagnostic testing. Genetics in Medicine, 26(8), Article 101146.

    Contact: [email protected]
    View online source

  • Clinician-reported Genetic Testing Utility Index (C-GUIDE)

    Author(s): Hayeems, R. Z., Luca, S., Ungar, W. J., Bhatt, A., Chad, L., Pullenayegum, E., Meyn, M. S.
    Year: 2025

    Hayeems and colleagues developed The Clinician-reported Genetic Testing Utility Index (C-GUIDE) to define and quantify the clinical utility of genetic testing.

    Hayeems and colleagues developed The Clinician-reported Genetic Testing Utility Index (C-GUIDE) to define and quantify the clinical utility of genetic testing. C-GUIDE was designed to capture the utility of a genetic test as it relates to (1) understanding diagnosis and prognosis, (2) informing medical management, (3) awareness and actionability of reproductive and health risks for patients and family members, and (4) overall patient and family well-being.

    Research Population: Clinicians
    Citation:

    Hayeems, R. Z., Luca, S., Ungar, W. J., Bhatt, A., Chad, L., Pullenayegum, E., & Meyn, M. S. (2020). The development of the clinician-reported genetic testing utility index (C-GUIDE): A novel strategy for measuring the clinical utility of genetic testing. Genetics in Medicine, 22(1), 95–101.

    Validation(s):

    • Hayeems, R. Z., Luca, S., Xiao, B., Boswell-Patterson, C., Lavin Venegas, C., Abi Semaan, C. R., Kolar, T., Myles-Reid, D., Chad, L., Dyment, D., Boycott, K. M., Lazier, J., Ungar, W. J., & Armour, C. M. (2025). The Clinician-reported Genetic Testing Utility Index (C-GUIDE) for Prenatal Care: Initial evidence of content and construct validity. Genetics in Medicine, 27(1), Article 101306.

    • Hayeems, R. Z., Luca, S., Ungar, W. J., Venkataramanan, V., Tsiplova, K., Bashir, N. S., Costain, G., Inglese, C., McNiven, V., Quercia, N., Shugar, A., Yoon, G., Cytrynbaum, C., Dupuis, L., Shao, Z., Hewson, S., Shuman, C., Aul, R., Liston, E., Babul-Hirji, R., Bushby, A., Pullenayegum, E., Chad, L., & Meyn, M. S. (2022). The clinician-reported genetic testing utility index (C-GUIDE): Preliminary evidence of validity and reliability. Genetics in Medicine, 24(2), 430–438.

    Contact: [email protected]
    View online source

  • Attitudes Toward Genomics and Precision Medicine (AGPM)

    Author(s): DuBois, J. M., Mozersky, J., Antes, A., English, T., Parsons, M. V., Baldwin, K.
    Year: 2025

    DuBois and colleagues developed the Attitudes Toward Genomics and Precision Medicine (AGPM), a novel measure which evaluates attitudes toward activities such as genetic testing, collecting informat

    DuBois and colleagues developed the Attitudes Toward Genomics and Precision Medicine (AGPM), a novel measure which evaluates attitudes toward activities such as genetic testing, collecting information on lifestyle, and genome editing.

    Research Population: Adults
    Citation:

    DuBois, J. M., Mozersky, J., Antes, A., English, T., Parsons, M. V., & Baldwin, K. (2021). Attitudes toward genomics and precision medicine. Journal of Clinical and Translational Science, 5(1), Article e120. https://doi.org/10.1017/cts.2021.774

    Validation(s):
    • DuBois, J. M., Mozersky, J., Antes, A., English, T., Parsons, M. V., & Baldwin, K. (2021). Attitudes toward genomics and precision medicine. Journal of Clinical and Translational Science, 5(1), Article e120. https://doi.org/10.1017/cts.2021.774
    • Anghel, E., Pineros-Leano, M., McDonald, I. R., Dwyer, A. A. (2025). Psychometric properties of a culturally adapted Spanish version of the Attitudes Toward Genomics and Precision Medicine instrument. Public Health Genomics. Advance online publication. https://doi.org/10.1159/000546101
    Contact: [email protected]
    View online source