Rett Syndrome Global Registry

The Rett Syndrome Global Registry is expected to launch first quarter of 2021. The registry will tap into parents’ valuable day-to-day experience with their child, provide new and unique tools to manage their child’s care while advancing research and therapeutic development.

We are looking for families to join our Registry Pioneer program and enter data before the launch. The Pioneer program will allow the registry to launch with a foundational dataset and be of immediate use. From there the registry will grow in value with each new family that registers and contributes their important information and experience.

Please register below to become a Registry Pioneer and we will contact you with more information and updates on progress.