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Measuring Clinically Meaningful Change in Populations with Limited Neurobehavioral Repertoires: Approaches, Strengths, and Challenges

April 11, 2023 from 11:00 am to 11:50 am

Chair: Greta Wilkening, University of Colorado,  School of Medicine, Colorado Children’s Hospital

Discussant: Tracy King, NIH/NICHD


  • What to do when our Tests Fail us?  Cognitive Testing in Rare Genetic Conditions: Audrey Thurm, Neurodevelopmental and Behavioral Phenotyping Service, NIMH Intramural Research Program; Cristan  Farmer, Neurodevelopmental and Behavioral Phenotyping Service, NIMH Intramural Research Program
  • Development and validation of a suite of outcome measures for CDKL5 Deficiency Disorder : Scott Demarest, University of Colorado, School of Medicine,  Precision Medicine, Children’s Hospital Colorado
  • Use of objective motor measures and  developmental assessment to assess clinically meaningful change in Angelman syndrome trials: Jessica Duis, University of Colorado, School of Medicine, Children’s Hospital Colorado
  • Target Engagement Using EEG Biomarkers in Fragile X Syndrome: A Case Example : Lauren Schmitt, Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine
  • Using Innovative Methods to Assess Cognition and Behavior in Individuals with Intellectual and Developmental Disabilities: Andrew Dakopolos, UC Davis Mind Institute, Translational Psychophysiology and Assessment Laboratory; Emma Condy, National Institute of Health; Elizabeth Smith, Cincinnati Children’s Hospital Medical Center; Dana  Glassman,  MIND Institute, UC Davis; Danielle  Harvey, UC Davis, Aaron Kaat, Richard Gershon, Claire Michalak, Jeanine Coleman, Keith Widaman, Karen Riley, Elizabeth Berry-Kravitz and David Hessl