Preferences for Accessing Electronic Health Records for Research Purposes: Views of Parents Who Have a Child With a Known or Suspected Genetic Condition

The purpose of this study was to examine parental preferences for researchers accessing their child ’s electronic health record across 3 groups: those with a child with (1) a known genetic condition (fragile X syndrome FXS), (2) a suspected genetic condition (autism spectrum disorder [ASD]), and (3) no known genetic condition (typically developing).

Source: Value in Health - October 26, 2020 Category: International Medicine & Public Health Authors: Melissa Raspa, Ryan S. Paquin, Derek S. Brown, Sara Andrews, Anne Edwards, Rebecca Moultrie, Laura Wagner, MaryKate Frisch, Lauren Turner-Brown, Anne C. Wheeler Source Type: research