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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 - 20 of 20 Research Tools
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CSER Phase 1: Personalized Medicine Based on Molecular Profiling of Pediatric and Young Adult Patients with Cancer Study Protocol
Year: 2015The Personalized Medicine Based on Molecular Profiling of Patients with Cancer implements a mechanism for patients who have advanced or refractory cancer to undergo tumor sequencing, sequence analy
Research Population: Adults -
Genomics ADvISER
Year: 2021Genomics ADvISER is a digital decision aid for use in the delivery of genomic counseling. It is intended as a supplement to genomic counseling with a counselor.
Research Population: AdultsContact: [email protected] -
Optional Results Choice Aid (ORCA)
Year: 2021The Optional Results Choice Aid (ORCA) is a decision aid to support informed, values based decision-making for adult patients and research participants about the reciept of medically actionable, ad
Research Population: AdultsContact: [email protected] -
CSER Phase 1: Personalized Oncology Through High-throughput Sequencing:
MI-ONCOSEQ Study ProtocolYear: 2015The Personalized Oncology Through High-throughput Sequencing: MI-ONCOSEQ (Michigan Oncology Sequencing Center) (formerly known as “Personalized Medicine Based on Molecular Profiling of Patients wit
Research Population: Adults -
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] -
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] -
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] -
The Public Understanding and Attitudes towards Genetics and Genomics (PUGGS) Questionnaire
Year: 2017Carver and colleagues developed the Public Understanding and Attitudes towards Genetics and Genomics (PUGGS) questionnaire to assess college students' knowledge of genetics, including gene-env
Research Population: AdultsContact: [email protected]