Award
National Center on Birth Defects and Developmental Disabilities RFA-DD-21-002
Characterizing the Natural History of Fragile X Syndrome to Inform the Development of Intervention, Outcome Measures
Recipient
RUSH UNIVERSITY MEDICAL CENTER
Award Amount
$800,000.00
Ceiling
$800,000.00
Awarded
June 27, 2025
Identifier
RFA-DD-21-002
Award to study the natural history of Fragile X Syndrome through data collection at multiple clinics to inform interventions and public health policies.
Description
This project aims to collect natural history data at 26 FXS clinics in the USA, involving 600 individuals with FXS born between 2003-2017. The data will be used to understand the impact of early diagnosis, services, and social issues on cognitive, behavioral, and adaptive functions, informing public health policies and intervention trials.