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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
41 - 50 of 90 Research Tools
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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 -
The Genetics of Alzheimer's (Video)
Year: 2010This short (3 minute) English language video provides information on Alzheimer's disease, including its genetic component.
Research Population: Adults, AdolescentsContact: [email protected] -
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] -
Sharing Power with Communities in Priority-Setting for Health Research Projects: A Toolkit
Year: 2021Pratt developed Sharing Power with Communities in Priority-Setting for Health Research Projects (a set of four worksheets and a companion document available in this database), following consultatio
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] -
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] -
Consent Form, All of Us Research Program
Year: 2021This consent form is utilized by the All of Us Research Program (All of Us), a health research program, funded by the National Institutes of Health, that will study health data from over one millio
Research Population: AdultsValidation(s):- Doerr, M., Moore, S., Barone, V., Sutherland, S., Bot, B. M., Suver, C., & Wilbanks, J. (2021). Assessment of the All of Us research program's informed consent process. AJOB Empirical Bioethics, 12(2), 72–83.