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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
81 - 89 of 89 Research Tools
-
California Consumers’ Views of Data Sharing for Healthcare And Research Survey
Year: 2015Kim, Joseph, and Ohno-Machado created the California Consumers’ Views of Data Sharing for Healthcare And Research Survey to assess technology use, opinions about electronic health records and reses
Research Population: Adults -
Provider Perceptions of Patient-Generated Family Health Histories Survey
Year: 2009This survey was designed to elicit responses from providers’ regarding their experiences with and perceptions about patient-generated family histories.
Research Population: PhysiciansContact: [email protected] -
Attitudes of Parents of Sickle Cell Anemia (SCA) Affected Children Toward Prenatal Diagnosis of SCA Survey
Year: 2011Wonkam and colleagues designed this survey to gather information about how Cameroonian parents with SCA-affected children feel towards prenatal diagnosis and termination of an affected pregnancy.
Research Population: ParentsContact: [email protected] -
Genetic Genealogy Experiences Survey
Year: 2022Guerrini and colleagues designed the Genetic Genealogy Experiences Survey to gather information about the experiences of users of genetic relative-finder services offered by direct-to-consumer gene
Research Population: AdultsContact: [email protected] -
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.
-
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.
-
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 -
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]