I-FASD: Understanding Clinical Data and Pathways to Inform Surveillance of Children with Fetal Alcohol Spectrum Disorders

Fetal Alcohol Spectrum Disorders (FASDs) are a group of overlapping diagnoses that can occur in a person who was prenatally exposed to alcohol. Public health surveillance of children with FASDs is essential for understanding the magnitude of these conditions in the population, as well as understanding associated needs, healthcare utilization, and comorbidities. Information from existing healthcare data systems (including electronic medical records and electronic claims databases) are a potential source of surveillance data, but a better understanding of these data, and the processes and pathways by which children with a potential FASD are referred, evaluated, and receive care are needed. This non-research surveillance NOFO will work with clinical sites that have experience evaluating, diagnosing, or providing care to children with FASDs to: (1) identify, describe, and abstract information from data sources that contain relevant healthcare related information about children referred, evaluated, or diagnosed with FASDs; (2) characterize the availability and quality of healthcare related data, as well as opportunities for using healthcare related information for public health surveillance; and (3) describe and assess processes and pathways for identifying, referring, evaluating and diagnosing children with a potential FASD. Findings from this NOFO will be used to inform future surveillance activities.