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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
1 - 10 of 10 Research Tools
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Instrument for assessing mass media reporting of disease-related genetic discoveries
Year: 2002Instrument for assessing mass media reporting of disease-related genetic discoveries is a 38-item tool for evaluating the quality and balance of media stories reporting genetic discoveries related
Research Population: N/AValidation(s):- Mountcastle-Shah, E., Tambor, E., Bernhardt, B. A., Geller, G., Karaliukas, R., Rodgers, J. E., & Holtzman, N. A. (2003). Assessing mass media reporting of disease-related genetic discoveries: Development of an instrument and initial findings. Science Communication, 24(4), 458-478.
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CSER Phase 1: Tumor Mutation Explanation Card
Year: 2012This short explanation card defines a tumor mutation and describes what parents of pediatric patients can expect from a tumor mutation report.
Research Population: Parents -
CSER Phase 1: Inherited Mutation Explanation Card
Year: 2012This short explanation card defines an inherited mutation and describes the information that parents might find on their child's inherited mutation report.
Research Population: Parents -
CSER Phase 1: X-Linked Explanation Card
Year: 2013This short explanation card defines carrier status for X-linked recessive conditions.
Research Population: Parents -
CSER Phase 1: Revised Carrier Status Explanation Card
Year: 2012This hort explanation card defines carrier status for recessive genetic conditions.
Research Population: Parents -
Assessment of Strategic Integration of Genomics across Nursing (ASIGN) Maturity Matrix
Year: 2020The Assessment of Strategic Integration of Genomics across Nursing (ASIGN) maturity matrix (MM) is a self-assessment tool that enables users to asesses the progress of their country, city, or organ
Research Population: AdultsContact: [email protected] -
Plain Text Script, Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2015This plain text script includes descriptions of the three animated videos that were utilized in the ROMP study, which assessed adult patient's attitudes toward research on medical practices in
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]