Update on the ORCA Communication Measure

In May 2021, the STXBP1 Foundation joined forces with Duke University and COMBINEDBrain and other disorders to evaluate and validate a new tool to measure communication, called the Observer-Reported Communication Ability (ORCA) measure, for STXBP1 disorders.

Why do we need a new way to measure communication ability? Communication challenges have been consistently identified by our families as a top concern. Yet, existing tools don’t easily enable us to capture the full communication abilities of our children, especially non-verbal communication. Our original news story on the ORCA is here.

This project is being funded by a grant from the FDA. The first phase of the project for STXBP1 includes patient family interviews, which were completed in spring 2022.

Here are a couple useful resources to learn more:

• Expanding the ORCA Measure webinar with Dr. Christy Zigler from Duke, hosted by COMBINEDBrain

• Presentation to Duke by STXBP1 Foundation President, Charlene Son Rigby on STXBP1 patient communication