The Inchstone Project is a multidisciplinary group of consumers, stakeholders, researchers and clinicians collaborating to accelerate outcome measures development. It grew out of a widespread consensus among leaders of patient-advocacy groups representing diverse developmental and epileptic encephalopathies (DEEs) that the inability of existing tools to capture small improvements in severely affected children could jeopardize trials of new disease-altering treatments. The focus of this project is on critical outcome domains for individuals with DEEs who have severe functional and cognitive impairments and whose progress cannot be meaningfully captured with standard clinical outcome assessments.

We came together to address this unmet need and to identify and develop measures that are sensitive to the small but important changes (inchstones) that many at the severely affected end of the DEE spectrum may have in response to new therapies. Working together, we have developed a blueprint for accelerating progress toward validated measures suitable for those severely affected by DEEs as well as other severe populations.

Countless new targeted or gene-based therapies are nearing trials which could be jeopardized by the absence of tools to capture small but significant improvements in populations who routinely fall 3-5 standard deviations below the mean and are not currently measured.

The success of emerging precision medicines may well depend on new or adapted precision measurement tools with the ability to capture improvements within the most severely affected subpopulations. The Inchstone Project presents an efficient and focused collaborative effort to advance the “precision measurement” that is essential to the success of “precision medicine.”

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