Research Tools

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 receive genetic results, etc.

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, subjective numeracy, race/ethnicity, healthcare system distrust, child health (visual analog scale), and PedsQL for quality of life measurement.

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 anxiousness, nervousness, uncertainty, etc, in the past week.

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, refusal to receive genetic results, etc.

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 secondary findings. It assesses provider experience with genetics, confidence in patient communication and care management, perceived utility of genomic test result for the patient's care, demographic information, and provider recommendations based on the genetic test result.

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 Results Follow-up #1 Survey. The Follow-up #2 Survey captures provider healthcare actions (screenings, procedures, drugs, and referrals) and recommendations.

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 they wished to be returned from a multigene sequencing panel. Site-specific protocols in the Supplementary Materials range from brief screeners to decision aids.

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 preventability and severity.The survey also enables participants to exclude mental health, developmental, childhood degenerative, and adult-onset disorders. During the course of this study, participants also reviewed a hypothetical results report with conditions divided into categories based on preventability and severity and were offered the opportunity to revise their preferences.

Fagerlin and colleagues developed the Subjective Numeracy Scale (SNS) to distinguish low- and high quantitative ability individuals for use with patients that need to understand the risks of medical treatments. The SNS is a self report numeracy measure.