The project’s primary goal is to generate FDA-approved measures that are adapted to work for those severely impacted by DEEs.
Ardea Outcomes joined forces with leading clinical outcome assessment (COA) researchers, clinicians, patient advocacy groups, and industry partners to establish The Inchstone Project, a project focused on accelerating outcome measures for individuals with severe Developmental Epileptic Encephalopathies (DEE). The multidisciplinary group came together to address the need for developing sensitive and accurate measurements to detect small meaningful improvements or “inchstones” that many at the severely affected end of the DEE population may have in response to new therapies. The project’s primary goal is to generate FDA-approved measures adapted to work for those severely impacted by DEEs.
Over the years, Ardea Outcomes has pioneered capturing patient voice in clinical development through deep understanding of Goal Attainment Scaling (GAS) research. GAS provides pharma partners and researchers with a sensitive and patient-centered tool that helps capture those small improvements usually overlooked by standard clinical outcome measures.