Skip to main content

RSRT Studies

One of RSRT’s strengths is identifying critical research gaps and filling them. The following studies have been initiated by RSRT and are being conducted with academic and industry partners with the expectation that they will accelerate drug development.

Rett Syndrome Global Registry

The Rett Syndrome Global Registry is a parent/caregiver-driven initiative that taps into families valuable day-to-day experience with Rett, provides new and unique tools to manage their child’s needs, while advancing research and therapeutic development.


RSRT is partnering with a technology company, Ciitizen, to collect, digitize, and analyze the medical records of people with Rett syndrome. In order to test and develop potential Rett therapies, drug companies need longitudinal data about the disease, including symptoms and medications. If we had to collect that information starting today, it would take years to have enough to share with drug developers. But years-worth of data already exists in our loved ones’ medical records. The data collected from medical records complements the data in the Global Registry and can also be utilized by biopharmaceutical companies researching a cure for Rett to speed up progress. Check back for updates about enrollment opportunities with Ciitizen.


Communication is one of the most important symptoms of the disorder that families would like to see improved.Currently, there is no comprehensive tool to assess communication among individuals with Rett Syndrome. The Observer-Reported Communication Ability (ORCA) is a communication-focused assessment tool that is currently being used in clinical trials and natural history studies for individuals with Angelman syndrome. RSRT is partnering with the developers of the ORCA at the Center for Health Measurement at Duke University School of Medicine to adapt and validate the ORCA for Rett, so that it can be used in clinical trials.