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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 98 Research Tools
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My46: A Web-based Tool for Self-guided Management of Genomic Test Results
Year: 2017Tabor and colleagues developed My46, a self-guided, web-based information management system for individuals undergoing genetic testing in clinical and research settings, to enable them to choose wh
Research Population: Adults -
CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3) Germline Sequencing Form
Year: 2014This form is for physicians to record demographic and clinical information about a patient to facilitate laboratory interpretation of whole exome sequencing results.
Research Population: Adults, Children -
Consent to Share Genetic and Health Information, Clinical Genome Resource (ClinGen)
Year: 2017This one-page consent form helps to faciliate consent and promote broad genomic data sharing in the clinical setting.
Research Population: AdultsContact: [email protected] -
Genetic Literacy Survey
Year: 2015Abrams and colleagues designed the Genetics Literacy Survey to gather information about how the public understands genomics and applies their knowledge in everyday scenarios beyond medical settings
Research Population: AdultsValidation(s):- Abrams, L. R., McBride, C. M., Hooker, G. W., Cappella, J. N., & Koehly, L. M. (2015). The Many Facets of Genetic Literacy: Assessing the Scalability of Multiple Measures for Broad Use in Survey Research. PLOS ONE, 10(10), e0141532.
Contact: [email protected] -
Misattributed Paternity Questionnaire
Year: 2017Lowe and colleagues developed a questionnaire containing two scenarios in which misattributed paternity is incidentally discovered, possible courses of action for the doctor in each scenario, and a
Research Population: AdultsContact: [email protected] -
Preferences Instrument for Genomic Secondary Results (PIGSR)
Year: 2017The PIGSR is a brief instrument that enables adult respondents the ability to express their preferences or opt out of getting secondary results.
Research Population: Adults -
Genetic Literacy and Comprehension (GLAC) Measure
Year: 2014Hooker and colleagues designed the Genetic Literacy and Comprehension (GLAC) measure to assess research participant familiarity with eight commonly used genetic terms and concepts (genetic, chromos
Research Population: Adults -
CSER Phase 2 Adult Patient Measures – BASELINE
Year: 2018This baseline measure for adults enables the collection of information on sex, age, language, income, education level, insurance status, country of origin, access to care, health literacy, subjecti
Research Population: Adults -
CSER Phase 2 Adult Decliner Survey
Year: 2018This survey for study decliners captures demographic and insurance status information and elicits information about why participants declined to join the study such as privacy concerns, refusal to
Research Population: Adults -
CSER Phase 2 Parental Patient Measures – BASELINE
Year: 2018This baseline measure for parents enables the collection of information on sex, age, language, income, education level, insurance status, country of origin, access to care, health literacy, subject
Research Population: Parents