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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
Preferences for the Return of Pediatric Biobank Results Survey
Christensen and colleagues developed a survey to enable parents of pediatric patients to set preferences for return of individual results from research on pediatric biobank samples based on disease… -
Research Tool
CSER Phase 2 Provider Return of Results Follow-up #1 Survey
CSER Phase 2 Provider Return of Results Follow-up #1 Survey is administered 0-6 weeks post-return of results to providers of research participants that were returned positive, negative, VUS, and… -
Research Tool
CSER Phase 2 Provider Return of Results Follow-up #2 Survey
CSER Phase 2 Provider Return of Results Follow-up #2 Survey is administered at 5-7 months post-return of results, regardless of whether the provider has completed the CSER Phase 2 Provider Return of… -
Research Tool
CSER Phase 2 Parent Decliner Survey
This 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 Tool
CSER Phase 2 Parental Patient Measures – BASELINE
This 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,… -
Research Tool
CSER Phase 2 - Feelings about Genomic Testing Results (FACToR) – Parent
This post-return of child genetic test results survey for parents assesses the psychosocial impact of receiving genomic findings by measuring how much participants had specific feelings such as… -
Research Tool
CSER Phase 2 Adult Decliner Survey
This 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 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
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…