When a child is born with a birth defect or diagnosed with a developmental disability, finding out what caused it can be very important. If the condition is genetic, it may affect other children or relatives. If it resulted from something during pregnancy—like a medication, an illness, or an environmental exposure—knowing that can help prevent future risks. Understanding the cause can also guide treatment decisions and help you prepare for your child’s needs.
The National Birth Defect Registry gathers information on birth defects and the genetic and exposure histories of parents. Researchers use this data to look for patterns that may reveal shared causes. You can read about past research projects here.
If you have any questions about participating in the registry and parent-matching project, please call Birth Defect Research for Children at (407) 895-0802, or email our staff.
Please report problems with the registry to staff@birthdefects.org.