The Case for Structured Data in Developmental-Behavioral Pediatrics: Project STANDARD (Structured Approach to Neurodevelopmental Care and Clinical Research Data)

Neurodevelopmental and behavioral problems (NBPs) such as attention-deficit hyperactivity disorder and autism spectrum disorder are highly prevalent in children and adolescents. Clinical care for NBPs is characterized by unwarranted variation, a limited number of systematic approaches to measuring outcomes and evidence-based treatments, and significant challenges to conducting large, longitudinal clinical research studies. Clinical documentation of care provided to children with NBPs can be lengthy and time-consuming, lacks standardization, and often does not include precise details about clinically and scientifically important information (e.g., diagnostic criteria, services provided, response to treatment). The lack of standardization and missing data limit the utility of clinical documentation to support clinical research and quality improvement.