Award
NIH Reporter #6U01DD001298-05M002
Characterizing the Natural History of Fragile X Syndrome to Inform the Development of Intervention, Outcome Measures
Recipient
Rush University Medical Center
Award Amount
$500,000.00
Ceiling
$500,000.00
Awarded
August 13, 2026
Identifier
6U01DD001298-05M002
This award funds a project to collect and analyze longitudinal data on individuals with Fragile X Syndrome across multiple clinics in the US to better understand outcomes and inform interventions and public health policies.
Description
The project aims to collect natural history data at 26 FXS Clinics in the USA from 600 individuals with Fragile X Syndrome (FXS) born between 2003-2017, including longitudinal data from half the cohort. The data will be used to analyze the impact of earlier diagnosis, services received, and medical/social issues on later cognitive, behavioral, and adaptive functions. This will inform public health policy, service delivery, and long-term intervention trials in FXS to improve health, functioning, and quality of life among persons with FXS and their families.