What is the Indiana Birth Defects and Problems Registry?
The Indiana Birth Defects and Problems Registry (IBDPR) is a statewide system that collects information about children born in Indiana with birth defects and birth problems.
What does the Indiana Birth Defects and Problems Registry do?
The IBDPR exists to promote fetal health, prevent birth defects, reduce infant mortality and improve the quality of life of Indiana residents. The Indiana Birth Defects and Problems Registry (IBDPR) has been monitoring birth defects since 1987 when the Indiana legislature authorized the IBDPR to establish a registry. State law requires that doctors, hospitals and other healthcare providers notify the IBDPR when a child is born with a birth defect.
The IBDPR is notified by healthcare providers about most conditions diagnosed up to age 3. Fetal alcohol syndrome is monitored up to age 5. Autism spectrum disorders are monitored for all ages. This information is used to determine the number of children born with birth defects.
View Indiana’s IBDPR Rule (410 IAC 21-3).
View the IBDPR Reportable Conditions List (Spanish)
Note: All information about children and families in the IBDPR is confidential so that the families’ rights are respected.
Why this information collected by the IBDPR?
To help parents of infants with special healthcare needs receive necessary services.
To find ways to prevent or reduce the impact of certain birth defects.
To identify factors that might be associated with birth defects.
To address community concerns about environmental effects that might increase the risk of a certain birth defect.
To provide education and awareness to the public.
What happens when patient information is reported to the IBDPR?
A hospital or healthcare provider informs the IBDPR that a child was diagnosed with a birth defect. All of the information about children and families reported to the IBDPR is kept confidential to respect the rights of families and remain HIPAA compliant. The Indiana Department of Health then plans services and provides resources based on the birth defect information received.