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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 - 40 of 79 Research Tools
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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] -
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 -
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] -
(4) Narrated Slideshow Videos: Introduction to Gene Drive Technologies for Lay Audiences
Year: 2020Schairer and colleagues created 4 Narrated Slideshow Videos that provide an introduction to gene drive technologies for lay audiences. Each narrated video is between 5-6 minutes.
Research Population: AdultsContact: [email protected] -
Genomic Results Educational Video for Adolescents
Year: 2019This 17 minute video provides adolescents with information on the meaning, limitations, and potential benefits and risks of receiving positive and negative genomic test results.
Research Population: AdolescentsContact: [email protected] -
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 -
Intro to Consent Video for American Indian and Alaska Native Participants, All of Us Research Program
Year: 2018This 28 second video for American Indian and Alaska Native participants briefly introducs the concept of consent.
Research Population: AdultsContact: [email protected]