Using Longitudinal Data to Characterize the Natural History of Fragile X Syndrome to Improve Services and Outcomes

This Notice of Funding Opportunity (NOFO) supports the maintenance and expansion of the Forward Online Registry with Accessible Research Database (FORWARD) to increase participation among adults with FXS. This supplement provides funds to expand the project period for Component A and Component B that were funded under CDC-RFA-DD-15-003. It enables the continuation and completion of the longitudinal data collection for FORWARD and is intended to allow continuation of data collections from individuals already enrolled in the database and from new enrollees. The purpose of the project is to contribute to the characterization of the population with fragile X syndrome (FXS) and to assess the impact of the condition on the health and quality of life of those affected across their lifespan. This NOFO will support the following components: Component A The purpose of Component A is to maintain the current FORWARD dataset, to coordinate efforts to expand the age range covered by this dataset to enable researchers to describe the natural history of FXS across the life span and to characterize the long-term impact of interventions and treatments on both health outcomes and quality of life. Component B The purpose of Component B is to support a Data Coordinating Center that will receive, process, and analyze the data from patients, parents, clinicians, and laboratories as reported from clinics participating in the FORWARD longitudinal database and from other sources.