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Results of the Rett ORCA Study: How Rett Families Are Impacting Clinical Trials

September 29, 2022

The first Rett communication scale has been developed! 279 Rett families contributed to the development of the very first tool to specifically measure communication ability in Rett syndrome.

On September 28, 2022, Bryce Reeve, PhD of Duke University, who led the development of the Observer-Reported Communication Ability (ORCA) measure for Rett, joined RSRT’s Chief Scientific Officer Jana von Hehn, PhD, for a review of the study and how this new tool will help evaluate therapies in upcoming clinical trials. A special thanks to the families who participated in this enormous effort and the RSRT donors who made this important work possible.



Dr. von Hehn's slides

Dr. Reeve's slides

More Resources

More about the ORCA study