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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
101 - 108 of 108 Research Tools
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Consent Form, All of Us Research Program
Year: 2021This consent form is utilized by the All of Us Research Program (All of Us), a health research program, funded by the National Institutes of Health, that will study health data from over one millio
Research Population: AdultsValidation(s):- Doerr, M., Moore, S., Barone, V., Sutherland, S., Bot, B. M., Suver, C., & Wilbanks, J. (2021). Assessment of the All of Us research program's informed consent process. AJOB Empirical Bioethics, 12(2), 72–83.
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HIPAA Authorization for Research–Electronic Health Record Supplement, All of Us Research Program
Year: 2018This form includes information for participants and collects a consent for the the All of Us Research Program (All of Us) to access to their electronic health records.
Research Population: AdultsValidation(s):- Doerr, M., Moore, S., Barone, V., Sutherland, S., Bot, B. M., Suver, C., & Wilbanks, J. (2021). Assessment of the All of Us research program's informed consent process. AJOB Empirical Bioethics, 12(2), 72–83.
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Consent to Get DNA Results Form, All of Us Research Program
Year: 2021This consent form, created by the All of Us Research Program (All of Us) for American Indian and Alaska Native participants, provides information about the DNA results available to participants and
Research Population: Adults -
ELSI Research Methods Questionnaire
Year: 2023Cho and colleagues created this questionnaire to understand the research methodologies currently being used in the study of the ethical, legal, and social implications (ELSI) of genetics and…
Research Population:Contact: [email protected] -
Inteview Guide: Knowledge and Attitudes about Privacy and Secondary Data Use among African-Americans Using Direct-to-Consumer Genetic Testing
Year: 2022Ziegler and colleagues developed this semi-structured, qualitative, interview guide to elicit perspectives from Black/African-American participants on direct-to-consumer genetic testing.
Research Population: AdultsContact: [email protected] -
Interview Guide: Diverse Parental Perspectives of the Social and Educational Needs for Expanding Newborn Screening through Genomic Sequencing
Year: 2022Timmins and colleagues created this semi-structured interview guide to explore parents' perspectives on expanded newborn screening through genomic sequencing.
Research Population: AdultsContact: [email protected] -
How Does Genetic Ancestry Testing Affect Perceptions of Race? Conjoint Survey Instrument
Year: 2022The Conjoint Survey Instrument is a survey instrument developed for the study “How Does Genetic Ancestry Testing Affect Perceptions of Race?” The study explores how respondents make racial classifi
Research Population: AdultsContact: [email protected] -
The Parental Personal Utility Scale (Parent PrU)
Year: 2024The Personal Utility Scale (PrU) asks participants to rate how useful they find nineteen outcomes of genome sequencing on a scale ranging from 1 (not at all useful) to 7 (extremely useful).
Research Population: Adults, ParentsValidation(s):Turbitt, E., Kohler, J. N., Brothers, K. B., Outram, S. M., Rini, C., Sahin-Hodoglugil, N., Leo, M. C., & Biesecker, B. B. (2024) The Parent PrU: A measure to assess personal utility of pediatric genomic results. Genetics in Medicine, 16(1), Article 100994.
Contact: [email protected]