Research Tools

This study assessed the impact of a video and survey about expanded carrier screening on patient knowledge and decision making. The REDCap codebook for this study outlines each data element of the survey, including the questions administered to the participants.

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

This project developed and evaluated the efficacy of a game decision aid among pregnant women about prenatal screening in a randomized controlled study. The REDCap codebook for this study outlines each data element of the survey, including the questions administered to the participants.

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

This project developed and evaluated the efficacy of a game decision aid among pregnant women about prenatal screening in a randomized controlled study. 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

Goisef and colleagues developed a survey for professionals working in research-based biobanks in Europe that assess their satisfaction with current ELSI-related procedures. Topics assessed include: collaboration and data sharing with industrial partners, secondary uses of participant data, and recontacting participants. There are 25 questions in this survey.