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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
31 - 37 of 37 Research Tools
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eMERGE III Health Care Provider Work Group: Pre-return of Results Physician Interview Guide
Year: 2019This semi-structured interview guide provides physicians with scenarios in which adult and pediatric patients receive unsolicited genomic results and elicits their views about the need for provider
Research Population: PhysiciansContact: [email protected] -
Prenatal Diagnoses of Sex Chromosome Aneuploidies Interview Guide
Year: 2019This semi-structured interview guide is intended for use with individuals diagnosed with a sex chromosome aneuploidy (SCA) or with parents of a child diagnosed with a SCA.
Research Population: Adults -
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 -
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]