Advancing Appropriate Outcome Measures for those with Severe Epilepsies
Through our DEE-P Connections project—in partnership with COMBINEDBrain—we are pleased to be supporting an important collaborative effort to advance improved biomarkers and outcome measures for those severely affected by SCN8A and other DEEs and neurodevelopmental disorders.
One of the many distinct challenges of severely affected DEEs is the absence of validated biomarkers and outcome measures (BiOMes). Measurement of skills and functions is essential for:
- Evidence-based treatment and CARE
- Capturing small but valued improvements during CLINICAL TRIALS
- RESEARCH – to increase the depth and breadth of understanding of conditions and changes over time of vital life features of severe DEEs.
DEE-P Connections developed a partnership with a consortium of rare developmental disorders focused on developing biomarkers and outcome measures. Our effort brings together a highly skilled research team, 10 committed patient advocacy groups, and diverse experts working on improved outcome measures for those severely affected by DEEs and other neurological disorders.
We'll be sharing more about Phase 1 of our work and plans for Phase 2 here by the end of 2021!
If you are interested in joining a diverse group of stakeholders for our culminating events for Phase I of this program, on November 4th and 11th, please contact us below.
Thank you to the sponsors who had the vision to help make the inital work of this project come together!
We recognize that your privacy is important. Our privacy statement outlines the types of personal information we receive and collect when you use this website, as well as some of the steps we take to safeguard information. Please read more here.