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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
Clinical Broad Data Sharing Consent Video, Clinical Genome Resource (ClinGen)
The 10 minute video explains key concepts outlined in the Consent to Share Genetic and Health Information form. It include testimonials on the importance of data sharing as well as information on the… -
Research Tool
Feelings About genomiC Testing Results (FACToR) Questionnaire
This post-return of genetic test results survey assesses the psychosocial impact of receiving genomic findings by measuring how much participants had specific feelings such as anxiousness,… -
Research Tool
Preferences and Expectations for Return of Individual Research Results Survey
Sayeed and colleagues developed this survey for use in the Project Baseline Health Study, which collected a variety of participant data, including genetic test results. The survey includes questions… -
Research Tool
Clinical Broad Data Sharing Consent Brochure, Clinical Genome Resource (ClinGen)
This is a printable version of the information from the Clinical Broad Data Sharing Consent Video (see this database). It describes key concepts outlined in the consent form, includes testimonials on… -
Research Tool
Site Specific Tools for Participant Choices for Return of Genomic Results in the eMERGE Network
Several study sites in the third phase of the electronic MEdical Records and GEnomics (eMERGE) Network implemented protocols to enable research participants to choose the type of secondary results… -
Research Tool
Oversight (Video), 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
Consent (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
Security and Privacy (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
Uses of Data in Precision Medicine Research (Video), 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…