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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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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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 -
CSER Phase 2 Parent Decliner Survey
Year: 2018This survey for study decliners captures demographic and insurance status information and elicits information about why parents declined to enroll their child in the study such as privacy concerns,
Research Population: Parents