A $4 million cooperative agreement to “Characterize the Natural History of Fragile X Syndrome to Inform the Development of Intervention and Outcome Measures” was awarded to Dr. Elizabeth Berry-Kravis of Rush University Medical Center by the Centers for Disease Control and Prevention (CDC).

The five-year study funded by the cooperative agreement will build on the foundation of the Fragile X Online Registry With Accessible Research Database (FORWARD) in collaboration with CDC’s Study to Explore Early Development (SEED) Follow-up Study. It will involve in-person standardized assessments to observe cognition, language, behavior, and autism diagnosis. The study will also explore the practical, financial, and psychological impact that caring for a family member with Fragile X syndrome (FXS) has on caregivers and siblings.

The project aims to better define the natural history of FXS and determine meaningful outcome measures that will improve the lives of children and adolescents with FXS, and their families.

“The studies in this new Cooperative Agreement are expected to expand upon and complement the work on FORWARD and allow acquisition of rich natural history data to inform new intervention studies.” Dr. Elizabeth Berry-Kravis, FORWARD Principal Investigator from Rush University Medical Center.

“We are so excited to continue this incredible work in partnership with CDC, Fragile X experts, clinics, and most importantly the families living with FXS. We have already learned a great deal from this important study and will continue to work closely with our partners to gain knowledge that helps our community.” Linda Sorensen, NFXF Executive Director