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Research Tool
Prenatal Diagnoses of Sex Chromosome Aneuploidies Interview Guide
This semi-structured interview guide is intended for use with individuals diagnosed with a sex chromosome aneuploidy (SCA) or with parents of a child diagnosed with a SCA. It employs open-ended… -
Research Tool
CSER Phase 1: Informed Consent Document - Genomic Diagnosis in Children with Developmental Delay
This informed consent document for parents and minors in the Genomic Diagnosis in Children with Developmental Delay study includes standard consent language plus consent to storage of specimens for… -
Research Tool
eMERGE III Health Care Provider Work Group: Pre-return of Results Physician Interview Guide
This semi-structured interview guide provides physicians with scenarios in which adult and pediatric patients receive unsolicited genomic results and elicits their views about the need for provider… -
Research Tool
Scenarios for Ethical and Legal Analysis of Genomic Data Sharing Practices
McWhirter and colleagues report the development and validation of 6 scenarios based on actual genomic data sharing pratices in Australia. These scenarios could be used to inform the decision-making… -
Research Tool
CSER Phase 2 Follow Through on Medical Actions Attributable to Genomic Testing (MRA) Survey
The Follow Through on Medical Actions Attributable to Genomic Testing Survey, developed by the Clinical Utility, Health Economics, and Policy (CUHEP) working group, measures whether parents of… -
Research Tool
CSER Phase 2 Patient-Initiated Actions Attributable to Genomic Testing (PIA) Survey
The Patient-Initiated Actions Attributable to Genomic Testing Survey, developed by the Clinical Utility, Health Economics, and Policy (CUHEP) working group, asks adult patients to report whether they… -
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
Setting up a Biorepository (Video), The VALUES Project, The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research
This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process of precision medicine research. The video series was… -
Research Tool
Black-White Race Morphs Research Tool
The Black-White Race Morphs Research Tool is a resource comprised of 240 morphed images combining same-gender Black and White face images. The research tool uses original images from the Chicago Face… -
Research Tool
CSER Phase 1: Personalized Medicine Based on Molecular Profiling of Pediatric and Young Adult Patients with Cancer Study Protocol
The Personalized Medicine Based on Molecular Profiling of Patients with Cancer implements a mechanism for patients who have advanced or refractory cancer to undergo tumor sequencing, sequence…