Precise Measurements for Severe Epilepsies
What is an inchstone?
Clinical trials drive drug development, but traditional assessments focus on major milestones—walking, talking—while overlooking smaller yet meaningful "inchstones." For individuals with profound conditions like Developmental and Epileptic Encephalopathies (DEE), more sensitive and specific measurements are crucial. As parents, we see these subtle changes firsthand. Pharmaceutical companies need better tools to accurately capture these incremental but significant improvements.
Who are we?
A dedicated team of caregivers, researchers, clinicians, and industry partners working together to break down barriers that limit clinical trial inclusion and slow the development of life-changing treatments for those who need them most. Read their bios to find out more about this amazing team.
What We Do!
The Inchstone Project accelerates outcome measures development. We're on track to have FDA-approved measures, specifically adapted for individuals with severe DEEs, available within the next five years. Many promising new gene-based therapies are approaching clinical trials, but without the right tools to measure small yet meaningful improvements, those with the most severe challenges risk being left behind.
