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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
111 - 120 of 189 Research Tools
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Genomic Information and the Right Not to Know Questionnaire
Year: 2018Flatau and colleagues developed this survey to assess informational preferences among German patients, healthcare professionals, and members of the public in a genetic testing context.
Research Population: AdultsContact: [email protected] -
Awareness and Purpose of Genetic Counseling Survey
Year: 2013Maio and colleagues designed this survey to measure awareness and perceptions of the purpose of genetic counseling.
Research Population: AdultsContact: [email protected] -
Educational Video on Expanded Carrier Screening (ECS) & Autosomal Recessive (AR) Disorder
Year: 2020Conjin and colleagues created this brief educational video on autosomal recessive inheritance, the expanded carrier screening (ECS) test, reproductive options, and a description of MPS III (Sanfili
Research Population: AdultsContact: [email protected] -
Educational Text on Expanded Carrier Screening (ECS) & Autosomal Recessive (AR) Disorder
Year: 2020Conjin and colleagues created this brief online written educational summary on autosomal recessive inheritance, the expanded carrier screening (ECS) test, reproductive options, and a description of
Research Population: AdultsContact: [email protected] -
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: 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 -
The IntegratedEthics Staff Survey™ (IESS)
Year: 2013This survey, created by Pearlman and colleagues, measures the attitudes of staff towards ethical practices in multiple areas of a healthcare organizations.
Research Population: AdultsValidation(s):- Pearlman, R. A., Bottrell, M. M., Altemose, J., Foglia, M. B., & Fox, E. (2013). The IntegratedEthicsTM Staff Survey: A tool to evaluate and improve ethical practices in health care. AJOB Primary Research, 4(1), 7-19.