This parent consent form was approved by the Institutional Review Board for the Baylor College of Medicine and Affiliated Hospitals for use in the Incorporation of Genomic Sequencing into Pediatric Cancer Care Study. The purpose of the study was learn how to report and use clinical exome sequencing test results for childhood cancer patients.
This questionnaire was developed for use in the BASIC3 study. It collects demographic and health information from parents about their child.
This questionnaire was developed for the BASIC3 study. It collects a detailed family history of cancer from parents about their child.
This questionnaire for parents was developed for the BASIC3 study. It collects demographic and health information, measures numeracy and genetic literacy, and records parent preferences for making decisions about the care of their child.
This hort explanation card defines carrier status for recessive genetic conditions.
This short explanation card defines carrier status for X-linked recessive conditions.
This short explanation card defines an inherited mutation and describes the information that parents might find on their child's inherited mutation report.
This short explanation card defines a tumor mutation and describes what parents of pediatric patients can expect from a tumor mutation report.
This parental consent form from the NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis study is designed for the minor relatives of NCGENES study participants that received a genetic test result containing a variant of uncertain significance (VUS). This parental consent is for the minor relative to be tested for the VUS previously identified in the NCGENES study participant, not enrollment in the full NCGENES study.
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.