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
National Center on Birth Defects and Developmental Disabilities (NCBDDD), part of the CDC, US
Award Amount
$800,000.00
Ceiling
$800,000.00
Awarded
June 27, 2025
Identifier
RFA-DD-21-002
This award supports a project to study the natural history of Fragile X Syndrome in 600 individuals across 26 clinics in the USA to inform intervention development and public health policy.
Description
The project aims to collect natural history data at 26 FXS clinics in the USA, from 600 individuals with FXS born between 2003-2017, including longitudinal data from half the cohort. Data will be used to understand the impact of early diagnosis, services, and social issues on cognitive, behavioral, and adaptive functions, informing public health policy and intervention trials.