Fragile X Syndrome
Participant Age Range
4 years to 23 years
“Characterizing the Natural History of Fragile X Syndrome to Inform the Development of Intervention Outcome Measures”
This project is an extension of the CDC-funded FORWARD (Fragile X Online Registry With Accessible Research Database) study. This current extension project is known as FORWARD-MARCH (Multiple Assessments for Research Characterization) because it will include multiple assessments to characterize behavioral, adaptive and cognitive function in greater depth and thereby further improve understanding of the natural history of FXS. FORWARD-MARCH continues the mission of FORWARD to better understand the natural history of FXS in order to improve the lives of children and adolescents with FXS and the lives of their families. FORWARD-MARCH will also better define trajectories of development in FXS that will be useful in understanding the long-term effects of an intervention relative to the natural history of FXS.