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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 - 15 of 15 Research Tools
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Clinical Broad Data Sharing Consent Brochure, Clinical Genome Resource (ClinGen)
Year: 2017This is a printable version of the information from the Clinical Broad Data Sharing Consent Video (see this database).
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] -
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] -
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]