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2021 Workshops On Outcome Measures for Those Severely Impacted by DEEs




RECORDING – Advance Outcome Measures for Severely Affected Populations


Why EEGs Matter and What They Can Reveal

These meetings were planned in coordination with COMBINEDBrain.

Initial Outcome Research Efforts

online tools

The landscape phase of our collaborative efforts has identified multiple projects which are ready for adaptation, extended scaling, or testing  for exploration by potential consortium partners include:

  • Adapting the Vineland - Evaluate opportunities to adapt features of the Vineland tool to the broader severe populations; PI: Dr. Anne Berg
  • Health-Related Quality of Life Scale for DEEs - extend Quality of Life Inventory of Disabilities to include refined tools that recognize diverse impacts of severe disabilities; PI: Dr. Jenny Downs in collaboration with Epilepsy Foundation Epilepsy Learning Healthcare System team
  • Goal Attainment Scaling - Validate Goal Attainment Scaling, a highly sensitive measure of change, in the severe DEE population; PI: Chere Chapman, Ardea Outcomes
  • Rehabilitation Scales - adaptation of broad measures and tools developed for rehabilitation of individuals with profound trauma for broad DEE populations; PI: Dr. Natasha Ludwig, Kennedy-Krieger Institute
  • Final Disease Concept Map of select severe DEEs to provide reliable baseline of performance challenges and measurement requirements in severe DEEs; PI: Dr. Terry Jo Bichell
  • Ongoing Scouting and Documentation - ongoing collaborative effort to evaluate additional emerging opportunities on critical issues such as CVI, sleep, etc.; PI: Gabi Conecker

Slide Presentations

Presentation Materials

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