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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
11 - 17 of 17 Research Tools
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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 -
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 -
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] -
REVEAL Impact of Genetic Testing in Alzheimer’s Disease (IGT-AD) Scale
Year: 2010Chung and colleagues created the REVEAL Impact of Genetic Testing in Alzheimer’s Disease (IGT-AD) Scale to measure psychological impact of genetic susceptibility testing for Alzheimer disease (AD).
Research Population: AdultsValidation(s):- Chung, W, W., Chen, C. A., Cupples, L. A., Roberts, J. Scott, Hiraki, S. C., Nair, A. K., Green, R. C., & Stern, R. A. (2009). A new scale measuring psychologic impact of genetic susceptibility testing for Alzheimer disease. Alzheimer Disease & Associated Disorders, 23(1), 50-56.
Contact: [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 -
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]