The Centers for Disease Control and Prevention has awarded Elizabeth Berry-Kravis, MD, PhD, co-director, Molecular Diagnostics Section of the Genetic Laboratory, Rush University Medical Center, a $4 million cooperative agreement to “Characterize the Natural History of Fragile X Syndrome to Inform the Development of Intervention and Outcome Measures.”
The five-year agreement will build on the foundation of the Fragile X Online Registry With Accessible Research Database — or FORWARD — in collaboration with the CDC's “Study to Explore Early Development Follow-up Study."
FORWARD is a registry and a clinical database funded by the CDC in partnership with the National Fragile X Foundation that allows specialty clinics across the U.S. to work together and gather important information about people of all ages with fragile X.
“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,” says Berry-Kravis, a FORWARD principal investigator.
The agreement will involve in-person standardized assessments to observe cognition, language, behavior, and autism diagnosis. It will also explore the practical, financial and psychological impact that caring for a family member with fragile X has on caregivers and siblings.
The project aims to better define the natural history of fragile X syndrome and determine meaningful outcome measures that will improve the lives of children and adolescents with fragile X.
“We are so excited to continue this incredible work in partnership with the CDC, fragile X experts, clinics, and most importantly the families living with fragile X,” says Linda Sorenson, the foundation's executive director. “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.”
