Search Results
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
Preferences for the research use of electronic health records among young adults with fragile X syndrome or autism spectrum disorder
October 01, 2020
Article
Food and non-food-related behavior across settings in children with Prader-Willi syndrome
February 17, 2020
Article
Connecting caregivers to support: Lessons learned from the VA caregiver support program
April 18, 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
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
"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