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
A psychometric evaluation of the Motor-Behavioral Assessment Scale for use as an outcome measure in Rett syndrome clinical trials
November 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
Information and emotional support needs of families whose infant was diagnosed with SCID through newborn screening
May 06, 2020
Article
Decisional capacity for informed consent in males and females with fragile X syndrome
May 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