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Capturing Inchstones: Novel Approaches to Measurement for Severely Affected Children With SCN2A-Associated Developmental and Epileptic Encephalopathy

April 11, 2023 from 2:00 pm to 2:50 pm

Chair: Natasha  Ludwig , Kennedy Krieger Institute, Johns Hopkins School of Medicine

Discussants: Gabrielle Conecker, Decoding Developmental Epilepsies, International SCN8A Alliance, DEE-P Connections & Leah Schust Myers, FamilieSCN2A Foundation, Inc

Papers:

  • Communication in Severely Impaired Young People with SCN2A Developmental and Epileptic Encephalopathy: Experiences from the SCN2A Clinical Trials Readiness Study: Anne Berg, Northwestern Feinberg School of Medicine, COMBINEDBrain; Shawn Egan, FamilieSCN2A Foundation; Leah  Schust Myers, FamilieSCN2A Foundation; Lindsey Evans, Illinois Institute of Technology; Ariela  Kaiser, University of Illinois at ChicagoKatherine Paltell, Amanda Nils, Aaron J. Kaat, Erica Anderson
  • Exploring the Potential Utility of Responsivity Measures in Children and Young Adults With SCN2A-Associated Developmental and Epileptic Encephalopathy: Natasha  Ludwig, Kennedy Krieger Institute, Johns Hopkins School of Medicine; Mary  Wojnaroski, Nationwide Children’s Hospital, The Ohio State University; Rebecca Hommer, Maryland Connections Beyond Sight and Sound; Ariela  Kaiser, University of Illinois at Chicago; Katherine  Paltell, University of Illinois at ChicagoLindsey Evans, Karis Tucker, Jenny Downs, Chere Chapman, Gabrielle Conecker, JayEtta Hecker, Keith Coffman, Leah Schust Myers, Anne T. Berg
  • Qualitative methods identify functional abilities goals for children with SCN2A-Associated Developmental and Epileptic Encephalopathy: Chere  Chapman, Ardea Outcomes; Natasha  Ludwig, Kennedy Krieger Institute, Johns Hopkins School of Medicine; Mary  Wojnaroski, Nationwide Children’s Hospital, The Ohio Stat University; Leah  Schust Myers, FamilieSCN2A Foundation; Terry Jo  Bichell, COMBINEDBrainLindsey Evans, Ariela Kaiser, Katherine Paltell, JayEtta Hecker, Gabrielle Conecker, Anne T. Berg, Jenny Downs
  • Milliseconds as Inches: Using EEG in SCN2A to understand attention and learning: Caitlin Hudac, University of Alabama