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Research Tool
CSER Phase 2 Adult Patient Measures – BASELINE
This 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, subjective… -
Research Tool
Genetic Literacy and Comprehension (GLAC) Measure
Hooker and colleagues designed the Genetic Literacy and Comprehension (GLAC) measure to assess research participant familiarity with eight commonly used genetic terms and concepts (genetic,… -
Research Tool
My46: A Web-based Tool for Self-guided Management of Genomic Test Results
Tabor 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… -
Research Tool
Preferences Instrument for Genomic Secondary Results (PIGSR)
The PIGSR is a brief instrument that enables adult respondents the ability to express their preferences or opt out of getting secondary results. It is designed to be completed prior to testing… -
Research Tool
Misattributed Paternity Questionnaire
Lowe 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 Tool
Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS)
Peshkin and colleagues developed and tested the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS) to assess parental attitudes about and interest in testing their minor children for BRCA 1/2… -
Research Tool
Whole Genome Sequencing and You
“Whole Genome Sequencing and You” is a 10-minute educational animated video about whole-genome sequencing for research participants, patients, and the general public. -
Research Tool
Genetic Literacy Survey
Abrams 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 Tool
The Colored, Eco-Genetic Relationship Map (CEGRM)
Kenen and Preters designed the Colored Ecological and Genetic Relational Map (CEGRM), a pictoral map used to organize information about client relationships with biological and non-biological kin,… -
News
The Sulston Project: Making the Knowledge Commons for Interpreting Inherited Cancer Risk More Effective
The Sulston Project is a joint research effort at Arizona State University and Baylor College of Medicine named after John Sulston, the champion of open science who, with Bob Waterston, crafted the…- Genetic Data Sharing and Management