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Initial Outcome Research Efforts
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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