Research Tools

Case and colleagues developed an educational intervention (CRiTICS) for providers' communication of a positive prenatal genetic screening result. The data dictionary for this study outlines the structure, content, and variable definitions for the dataset.

University of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037

REDCap data dictionary for the project "Carrier Screening Decision-making: An Experimental Study of Media Influences on Conversational Development and Outcomes." The data dictionary outlines the structure, content, and variable definitions for the study dataset.

University of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037

The aim of this study was to develop a gaming prototype for decision making about pre-implantation genetic screening (PGS) with in vitro fertilization. The data dictionary for this study outlines the structure, content, and variable definitions for the dataset.

University of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037

This study investigated the efficacy and impact of prenatal education about newborn screening and use of residual dried blood spots (DBS) in research. The data dictionary outlines the structure, content, and variable definitions for the study dataset.

University of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037

This study evaluated public opinion about the policies and practices relevant to the retention and use of residual bloodspots for biomedical research. The data dictionary outlines the structure, content, and variable definitions for the study dataset.

University of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037

This survey was administered to pediatricians' during pediatric grand rounds to assess understanding of children's health rights. The data dictionary for this study outlines the structure, content, and variable definitions for the dataset.

University of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037

Mowery and colleagues conducted a descriptive study characterizing the influence of genetic testing on redirecting care for neo-nates. The data dictionary for this study outlines the structure, content, and variable definitions for the dataset.

University of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037

Rothwell and colleagues surveyed patients to assess the financial burden of genetic testing. The data dictionary for this study outlines the structure, content, and variable definitions for the dataset.

University of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037

This study assessed the impact of a video and survey about expanded carrier screening on patient knowledge and decision making. The data dictionary for this study outlines the structure, content, and variable definitions for the dataset.

University of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037

Rothwell and colleagues assessed the short-term impact of the play "Informed Consent" by Deborah Zoe Laufer (a fictionalized look at the controversy over specimens collected from the Havasupai Tribe for diabetes research in 1989) on perceptions of trust, willingness to donate biospecimens, and attitudes toward harm and privacy among the medical and undergraduate students, faculty, and the public in the Intermountain West. The data dictionary for this study outlines the structure, content, and variable definitions for the dataset.

University of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037