Birth Defects and Developmental Disabilities

A new report from TFAH finds that improvements in tracking information about birth defects and developmental disabilities could greatly enhance research efforts toward identifying causes, improving treatment, and discovering cures.

The report, “Birth Defects and Developmental Disabilities: The Search for Causes and Cures,” finds gaps in the collection of information about birth defects and developmental disabilities as well as missed opportunities to connect data collected by education and social service functions to health research studies.

To help advance scientific research related to birth defects and developmental disabilities, TFAH recommends:

• Systematically and comprehensively tracking birth defects and developmental disabilities and connecting this data with information about possible contributing factors to help identify possible environmental contributing factors or genetic links,
• Ensuring that existing education and social service agency data is connected to health research and data-collection efforts,
• Expediting scientific research to understand the reasons behind the recent escalation in developmental disabilities, ranging from Attention Deficit-Hyperactivity Disorder (ADHD) to autism spectrum disorders,
• Creating a coordinated system to track efforts to screen newborns for birth defects and developmental disabilities,
• Establishing a national repository for blood samples that can help identify the causes of birth defects and developmental disabilities, and
• Investing in ongoing studies including the National Birth Defects Prevention Study, the National Children’s Study, and the Centers for Autism and Developmental Disabilities Research and Epidemiology case-cohort study.