Precise Measurements for Severe Epilepsies

What is an Inchstone?

Child engaging with visual light-based communication or assessment tool used to measure developmental progress in DEE

What is an Inchstone?

Child engaging with visual light-based communication or assessment tool used to measure developmental progress in DEE

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.

Child lying beside red illuminated sensory lights used for visual stimulation and engagement in DEE

Our Team

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 is an Inchstone

Child engaging with visual light-based communication or assessment tool used to measure developmental progress in DEE

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.

Child lying beside red illuminated sensory lights used for visual stimulation and engagement in DEE

Meet Our Team

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. 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.

Graphic thanking 2025 industry partners of The Inchstone Project including Lundbeck, Longboard Pharmaceuticals, Jazz Pharmaceuticals, BioCodex, Stoke Therapeutics, Neurocrine Biosciences, and Ovid Therapeutics