Research Tools

These patient vignettes, based on the experiences of real participants in the Michigan Oncology Sequencing Center (MI-ONCOSEQ) DNA sequencing study, help adults understand what to expect should they choose to participate in the study and receive or choose not to receive certain study results.

The study brochure for the North Carolina Genomic Evaluation by Next-generation Exome Sequencing (NCGENES) study includes information on what whole exome sequencing is, why the study is being conducted, who can join, the health problems studied, how many participants can join, and what participants will be asked to do.

The brochure, developed by North Carolina Genomic Evaluation by Next-generation Exome Sequencing (NCGENES), describes Whole Exome Sequencing (WES) and six types of non-medically actionable incidental information that might be returned to NCGENES participants. This information is designed to help patients make an informed decision about whether or not to learn non-medically actionable incidental information that could be uncovered during whole exome sequencing.

The brochure, developed by North Carolina Genomic Evaluation by Next-generation Exome Sequencing (NCGENES), includes information about whole exome sequencing (WES), the three types of incidental information revealed by WES (medically actionable, not medically actionable, and no known medical value), and how NCGENES will allocate participants into groups to study two return of results decision interventions.

This questionnaire enables research participants to review categories of incidental findings that might be revealed during an exome test and select the categories of results that they would like to have returned to them/ become a part of their medical record.

This form is for physicians to record demographic and clinical information about a patient to facilitate laboratory interpretation of whole exome sequencing results. It also records family history of cancer and physician choice about receipt of carrier status information for autosomal recessive conditions.

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 published study protocol for the MedSeq trials includes a description of the study design; recruitment, enrollment, and sample size plan; patient exclusion/inclusion criteria; and process of interpreting WGS results and delivering them to physicians. It also includes an example of a general genome report as well as a cardiac risk report.