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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
21 - 30 of 65 Research Tools
-
Clinical Broad Data Sharing Consent Video, Clinical Genome Resource (ClinGen)
Year: 2017The 10 minute video explains key concepts outlined in the Consent to Share Genetic and Health Information form.
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] -
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] -
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] -
(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] -
Gene Modification Therapy Scenarios for Parents of People with Down Syndrome
Year: 2018Michie and Allyse developed five scenarios that describe existing and hypothetical interventions for symptoms of Down syndrome (DS): 1) prenatal physical intervention, 2) prenatal cognitive interve
Research Population: Parents -
Prenatal Screening Scenario
Year: 2016To examine participants' views of prenatal testing, Steinbach and colleagues developed a scenario that describes a 40-year-old pregnant patient who is offered prenatal screening for trisomies
Research Population: AdultsContact: [email protected] -
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] -
Intro to Consent Video for American Indian and Alaska Native Participants, All of Us Research Program (Spanish Version)
Year: 2018This 28 second video for American Indian and Alaska Native participants briefly introducs the concept of consent.
Research Population: AdultsContact: [email protected] -
Basic Information Video for American Indian and Alaska Native Participants, All of Us Research Program
Year: 2018This 22 second video for American Indian and Alaska Native participants explains the required contact information and the efforts the All of Us Research Program (All of Us) will undertake to find a
Research Population: AdultsContact: [email protected]