RSRT hosted a webinar for the official launch of the Rett Syndrome Global Registry, a fully remote platform now available in 9 languages. The registry is designed to:
- Arm parents with information to better care for their child
- Provide critical data to biopharmaceutical companies that will accelerate their genetic medicine programs for Rett
- Strive to do away with placebo groups by using registry participants as controls in clinical trials. This means every person who enrolls in a genetic medicine trial gets the therapeutic rather than a chance of getting placebo.
Our Chief Scientific Officer, Dr. Jana von Hehn was joined by Rett syndrome clinic directors, Dr. Bernhard Suter and Dr. Cary Fu who presented preliminary data form the registry and explained how the power of the Rett Syndrome Global Registry will grows with every family that participates.