A Brief History of FORWARD:
Over the past 15 years, CDC has funded four FORWARD Fragile X studies to expand understanding of Fragile X syndrome (FXS). The NFXF has been coordinating study efforts since the beginning and has been vital in ensuring its success.
The first study was launched in 2008 and piloted an infrastructure to study FXS across multiple sites. The Fragile X Clinical and Research Consortium was established and consisted of a network of FXS specialty clinics across the United States who engaged in collecting data. The second study developed FORWARD and piloted the infrastructure for a registry and for longitudinal data collection to support analysis of data over time in a large cohort. The third study expanded FORWARD infrastructure even further. The data collected in FORWARD advanced knowledge about FXS, its co-occurring conditions, and outcomes.
On September 01, 2021, the Centers for Disease Control and Prevention (CDC) issued a 5-year award to continue to build upon the foundation of the three prior FORWARD grants in collaboration with CDC’s Study to Explore Early Development (SEED) Follow-up Study. This current study is called FORWARD-MARCH.