Research Tools

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.

This patient 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.

The purpose of the MedSeq Project was to develop a process for a process for integrating information obtained from whole genome sequencing into clinical practice and to explore how physicians and their patients understand and utilize this information. The cardiologist consent provides information on the purpose of the study, study procedures, risks and possible benefits of particpating, payment, contact information for questions or concerns, and privacy protections.

The Manual for Deliberative Focus Group Discussions (dFGDs) on Feedback of Individual Findings in Genomic Research was originally developed for use among adults and adolescents enrolled in genomics research in South Africa and Botswana. However, the manual may be adapted for use in other settings and in studies using dFGDs on topics other than feedback of individual genetic results. The first section provides education on genes and how they impact on health. An animated video to describe these concepts was developed. The second section has embedded case study scenarios and an interview schedule which are used to guide deliberations.

The Assessment of Strategic Integration of Genomics across Nursing (ASIGN) maturity matrix (MM) is a self-assessment tool that enables users to asesses the progress of their country, city, or organization on the integration of genomics into nursing.

The Optional Results Choice Aid (ORCA) is a decision aid to support informed, values based decision-making for adult patients and research participants about the reciept of medically actionable, additional findings from genomic sequencing. ORCA will be implemented and evaluated in the NHGRI-funded Cancer Health Assessment Reaching Many (CHARM) study.

The GEmS can be used to assess the genomic healthcare empowerment of parents (e.g., the meaning of a diagnosis for their child, emotional management of the process, their confidence in utilizing the information, etc.) related to the conduct of genomic sequencing for diagnostic purposes in their children in both research and healthcare settings.

This self-administered, web-based survey using an experimental between-group design to compare the effects of four informational aids on respondents’ understanding of core aspects of research on medical practices, including variation in medical practice and the meaning of randomization.

This focus group guide assesses the perspectives of IRB professionals toward research on medical practices within usual care. It was utilized in the ROMP study for focus groups conducted for the purposes of developing and refining a survey instrument for the same population. The survey is also available in this database.

This 3 minute video was utilized in the ROMP study, which assessed adult patient's attitudes toward research on medical practices in the context of usual care. The video explains the influences on variation in usual medical care and the uncertainty doctors have about usual medical care.