Inchstone Results & Publications
Results
Publications
DEE Parents Speak Survey
Between Summer and Fall of 2023, we launched the DEE Parents Speak survey. We had 267 caregivers generously give their time to complete this extensive 2-part survey. Keep scrolling to see an overview of the survey results!
Overview
Caregivers of children with severe to profound impairments responded to our DEE Parents Speak survey. These responses are directly helping us develop measures to capture clinical trial outcomes. This page contains an overview of the project so far, general results, and a breakdown by disease groups. If you have specific questions or want to get involved in research, email us at inchstones@deepconnections.net
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Sex (proportion female)
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Autism Diagnosis
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Epilepsy Diagnosis
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Unique Disease Groups
Good Days
Bad Days
Disease Specific Dashboards
Click each image to learn more.
Inchstone Research Publications
We prioritize publishing our research and results to make them as widely accessible as possible. If you have any trouble downloading an article, or if you have any questions, please reach out to us at kelly@d-de.org.
Patient-Advocate-Led Global Coalition Adapting Fit-For-Purpose Outcomes Measures to Assure Meaningful Inclusion of DEEs in Clinical Trials
Caregiver-Reported Quality of Life in Individuals with Developmental and Epileptic Encephalopathy and Other Severe Neurodevelopmental Encephalopathies
Clinical Utility of the Developmental Profile-4 in Individuals with Developmental and Epileptic Encephalopathies and Severe to Profound Functional Impairment
FDA Patient-Focused Drug Development Guidances: Considerations for Trial Readiness in Rare Developmental and Epileptic Encephalopathies
Novel Approaches to Measuring Cognition in Individuals with Severe to Profound Functional Impairment: A Pilot Study in SCN2A-Related Disorders
The Feasibility of Personalized Endpoints in Assessing Treatment Outcomes for Rare Diseases: A Pilot Study of Goal Attainment Scaling in SCN2A-Associated Developmental Epileptic Encephalopathy
Caregiver-Reported Meaningful Change in Functional Domains for Individuals with Developmental and Epileptic Encephalopathy: A Convergent Mixed-methods Design
Impact of Non-Seizure Outcome Domains and Caregiver Priorities for Young People with Developmental and Epileptic Encephalopathies: A Community Survey
