The Inchstone Project Overview

For people living with Developmental and Epileptic Encephalopathies (DEEs) and other severe neurodevelopmental impairments, progress often looks different: longer eye contact, a new way of signaling discomfort, a moment of connection. We call these small but significant gains “inchstones” - and most assessment tools aren’t built to see them.

That gap has real consequences. Promising therapies are often tested with tools that miss the most meaningful and smallest improvements - or these individuals are excluded from trials altogether, leaving those with the greatest need furthest behind.

The Inchstone Project exists to close that gap. We’re an international, multidisciplinary collaborative: caregivers, clinicians, researchers, and industry partners - working in a pre-competitive space, to develop, adapt, and validate clinical outcome assessments (COAs) that are family-centered, strengths-based, and fit for purpose. Our work is grounded in families’ priorities and meets the rigor required to bring new treatments to those who need them.

Our research draws on caregiver surveys like the DEE Parents Speak Survey, qualitative work on what “better” looks like for families, pilot testing of existing instruments, and direct engagement with regulators, including the FDA,  ensuring our measures hold up in real clinical trials, and eventually, everyday care.

Explore what we’re working on now on Current Initiatives, see our findings on Results & Publications, or learn more About the Inchstone Project.

Gabi Conecker, MPH

 Co-founder & Executive Director

Jayetta Hecker, MS

 Board Chair and Co-founder

Jenny Downs, PhD

The Kids Research Institute Australia

Natasha Ludwig, PhD

Kennedy Krieger Institute

Rebecca Hommer, EdD

Connections Beyond Sight and Sound

Lynnley W. Moore, MA, CCC-SLP, CBIS

Kennedy Krieger Institute

Christina K. Zigler, PhD, MSEd

University of Pittsburgh