Search Results
Article
Preferences for accessing electronic health records for research purposes: Views of parents who have a child with a known or suspected genetic condition
December 01, 2020
Article
Preferences for the research use of electronic health records among young adults with fragile X syndrome or autism spectrum disorder
October 01, 2020
Article
Ethical, legal, and social issues related to the inclusion of individuals with intellectual disabilities in electronic health record research: Scoping review
May 21, 2020
Article
Connecting caregivers to support: Lessons learned from the VA caregiver support program
April 18, 2020
Article
Meaningful treatment outcomes for Sanfilippo syndrome: using a combination of focus groups and best-worst scaling to elicit and explore parents' priorities
March 01, 2020
Article
"Just tell me what's going on": The views of parents of children with genetic conditions regarding the research use of their child's electronic health record
March 01, 2020
Article
Food and non-food-related behavior across settings in children with Prader-Willi syndrome
February 17, 2020