ASSESSING STATUS AND OPPORTUNITIES FOR DEVELOPING OUTCOME MEASURES FOR THE MOST SEVERELY AFFECTED POPULATIONS

This is a recording of day one of the workshop, held November 4th 2021, and was focused on the topic “Assessing Status and Opportunities for Developing Outcome Measures for the Most Severely Affected Populations.”

Major presenters included:

An opening from Gabi Conecker, Co-Founder of the International SCN8A Alliance and DEE-P Connections

Terry Jo Bichell, Founder and Director of COMBINEDBrain

Ardea Goal Attainment Scaling presented by Chere Chapman

Rehabilitation model for severe neurological impacts/adaptation to severe DEEs presented by Kennedy Krieger

Research on DEE Outcomes by Anne Berg

Telethon Kids work on DEE Outcomes presented by Jenny Downs