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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
131 - 140 of 207 Research Tools
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Genetic Knowledge Test (Carrier Status, Autosomal Recessive Disorders, Expanded Carrier Screening)
Year: 2020Conjin and colleagues created this brief knowledge test to measure the effect of an educational video compared to an educational text.
Research Population: AdultsContact: [email protected] -
Expanded Carrier Screening Questionnaire
Year: 2020Conjin and colleagues created this questionnaire to assess genetic knowledge, the perceived severity of MPS III (Sanfilippo disease), perceived risk, and attitudes toward expanded carrier screening
Research Population: AdultsContact: [email protected] -
Attitudes Toward Prenatal Genetic Screening and Testing in Twin Pregnancies Survey
Year: 2018Reese and colleagues designed this survey to collect information on attitudes toward prenatal genetic screening and testing, including changes in attitude toward or uptake of testing related to the
Research Population: AdultsContact: [email protected] -
Interview Guide: Genetic Health Professionals’ Experiences with Informed Consent in Diagnostic Genomic Sequencing
Year: 2020This interview guide seeks to understand genetic health professionals' experiences with obtaining informed consent for diagnostic genomic sequencing from patients.
Research Population: Genetic Health Professionals -
Interview Guide: Experiences of Sharing Direct-to-Consumer Genetic Testing Results
Year: 2018This interview guide seeks to understand the experiences of those who publicly shared their direct-to-consumer genetic testing results on the online platform openSNP.
Research Population: Adults -
The IntegratedEthics Facility Workbook
Year: 2013The IntegratedEthics Facility Workbook (IEFW), created by the National Center for Ethics in Health Care, is an evaluation tool that helps health care facilities improve ethical practices and track
Research Population: Adults -
Semi-structured Interview Guide: Experiences with Personal Genomic Testing
Year: 2020This semi-structured interview guide explores perceptions and use of personal genomic testing (PGT).
Research Population: Adults -
Survey, Support for Government Regulation of GMO Foods and Percived Risk of GMO Products
Year: 2016This survey assesses support for government regulation of GMO foods and percived risk of GMO products.
Research Population: Adults -
Newborn Whole Genome Sequencing Scenarios
Year: 2013Goldenberg, Dodson, Davis, & Tarini created two scenarios to assess parents’ interest in whole-genome sequencing (WGS) for newborns.
Research Population: ParentsContact: [email protected] -
Semi-Structured Interview Guide: Storage and Use of Residual Newborn Bloodspots
Year: 2014Botkin and colleagues created this semi-structured interview guide to uncover what prospective parents are interested in knowing about the practice of retaining residual newborn screening bloodspot
Research Population: ParentsContact: [email protected]