Authors :
Presenting Author: Mary Wojnaroski, PhD – Nationwide Children’s Hospital/Ohio State University
Natasha Ludwig, PhD – Kennedy Krieger Institute
Kelly Muzyczka, PhD – Decoding Developmental Epilepsies
Anne Berg, PhD – N/A
Rebecca Hommer, EdD – University of Maryland
Gabrielle Conecker, MPH – Decoding Developmental Epilepsies
JayEtta Hecker, MS – Decoding Developmental Epilepsies
Jenny Downs, PhD – The Kids Research Institute Australia; Curtin School of Allied Health
Rationale:
Individuals with Profound Intellectual and Multiple Disabilities (PIMD) live with profoundly impaired (1) cognitive ability (IQ< 25) and (2) motor functioning, as well as co-occurring medical conditions, including Developmental and Epileptic Encephalopathy (DEE). For many families, improvement in functional abilities is just as important as seizure reduction. Given frequent genetic etiology, there is potential for precision medicines that will modify the disease process, including functional abilities, not just suppress symptoms (e.g., seizures). Development of these therapeutics is already underway creating urgency to identify fit-for-purpose measures that adequately assess non-seizure outcomes. We examined psychometric properties of the Developmental Profile-4 (DP4; Alpern, 2020) in a large sample of individuals with PIMD.