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 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.

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 purpose of PediSeq: The Pediatric Genetic Sequencing Project was to identify best practices for educating patients about exome and genome sequencing, determining the sequencing data relevent to patients, and returning results. This informed consent form and HIPAA authorization is appropriate for use with parents of study participants and children capable to providing assent. It contains consent to future analyses of test results, use of data or specimens for future research, future contact, and photgraphs, in addition to consent to study participation.

This consent form for adult patients or parents of minor patients (with child assent) includes standard consent language and the ability for participants to “opt out” of learning about genome sequencing results, unless a result is of urgent importance to their health.

This consent/ assent form for adults, adolescents, and parents of minors in the Personalized Medicine Based on Molecular Profiling of Patients with Cancer study includes consent to the use of tumor cells to create cell lines, consent to additional analysis of the sequencing data for research purposes, and "right not to know" provisions for results that may have significance for biological family members and results that may have potential medical impact.