Research Tools

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 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.

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.

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 took any actions following the return of genetic test results, including making changes to their own or their child's health care, lifestyle, or insurance.

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 pediatric patients took actions (such as sharing the results with healthcare providers) after receiving positive or negative findings on their child's genetic test.

The CSER Information Seeking Measure (two versions) is a single-item measure that assesses the sources of information that patients think they will be likely to use to obtain further information about their genetic test results. The measure should be administered post-return of results.

The study brochure for the BASIC3 Study, funded by the NHGRI, is an easy to read description of the study purpose, eligibility requirements, and study procedures. It also offers a basic explanation of how genetics relates to cancer.

The Personal Utility Scale (PrU) asks participants to rate how useful they find nineteen outcomes of genome sequencing on a scale ranging from 1 (not at all useful) to 7 (extremely useful). This scale, the Parental Personal Utility Scale (Parent PrU), was specifically adapted for parents of children who have undergone genomic testing.

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.