Natural History Study (NHS) - About thumbnail

About

Rett Syndrome Natural History Study

The Rett Syndrome NHS Database is the most comprehensive in the world. It contains 15 years of clinical data and over 7,000 data fields collected from over 1,000 patients with Rett syndrome. The study reflects the disorder’s characteristics across the entire life span along with varying degrees of disease severity. Researchers from across the globe continue to benefit from this rich data resource to help guide their investigative efforts.

Additionally, with the support of our Centers of Excellence and physicians throughout the United States, we will continue to collect this critical data through our Rett Syndrome Registry for years to come. The invaluable database ensures that scientists have the most up-to-date information about Rett which accelerates drug development.

Years of Data
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What We’ve Learned About Rett

Explore these resources to learn more about how Natural History data can be used for clinical care, drug development, and more.

The NHS was a one of-a-kind project funded by the National Institutes of Health (NIH) as part of the Rare Disease Clinical Research Network Consortium. IRSF is proud to be a legacy member of the Consortium.

OUR PROMISE

Unlocking Treatments and Cures: IRSF's Rett Syndrome Registry™

IRSF promises to be the best opportunity to better the lives of anyone living with Rett syndrome. But we can’t do it alone. Through our combined efforts, we continue to collect patient data which enables researchers to more fully understand the disorder in the search for effective treatments and a cure.