Perspectives on Data Sharing in Persons With Spinal Cord Injury.

ABSTRACT: Open data sharing of clinical research aims to improve transparency and support novel scientific discoveries. There are also risks, including participant identification and the potential for stigmatization. The perspectives of persons participating in research are needed to inform open data-sharing policies. The aim of the current study was to determine perspectives on data sharing in persons with spinal cord injury (SCI), including risks and benefits, and types of data people are most willing to share. A secondary aim was to examine predictors of willingness to share data. Persons with SCIs in the United States and Canada completed a survey developed and disseminated through various channels, including our community partner, the North American Spinal Cord Injury Consortium. The study coll

SUBMITTER: Warner FM 

PROVIDER: S-EPMC10659015 | biostudies-literature | 2023

REPOSITORIES: biostudies-literature