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Dataset Information

A CRISPR focus on attitudes and beliefs toward somatic genome editing from stakeholders within the sickle cell disease community.


ABSTRACT:

Purpose

Genome editing holds both tremendous therapeutic promise and significant potential risk. Sickle cell disease (SCD), the most commonly inherited blood disorder, is a frontline candidate for the clinical applications of this tool. However, there is limited knowledge of patient community values and concerns regarding this new technology. This study aims to investigate the perspectives of three key decision-makers (patients, parents, and physicians) toward participation in future CRISPR-mediated somatic genome editing clinical trials.

Methods

We utilized a mixed-methods approach, involving an educational video tool, two-part survey, and 15 moderated, audio-recorded focus groups, which were conducted in seven U.S. cities.

Results

Study participants expressed hope t

SUBMITTER: Persaud A 

PROVIDER: S-EPMC6606394 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature