Indiana Birth Defects and Problems Registry

What is the Indiana Birth Defects and Problems Registry?

The Indiana Birth Defects and Problems Registry (IBDPR) is a data system that collects information about children in Indiana to promote fetal health, prevent birth defects, and improve the quality of life of Indiana residents.

The earlier some birth defects are found, the better chance a baby has of living a long and healthy life.

What does the IBDPR do?

The IBDPR collects information on birth defects and birth problems for all children in Indiana from birth to 3 years old (reportable at any age for autism spectrum disorders and up to age 5 for fetal alcohol spectrum disorders). This information is used to determine the number of children born with birth defects, to plan intervention and prevention strategies, and to offer resources to families.

State law requires that doctors, hospitals, and other health care providers send a report to the IBDPR at the Indiana State Department of Health when a child is born with a birth defect.

Click here to view Indiana’s IBDPR Rule (410 IAC 21-3).

Click here to read the most recent Progress Report to the Indiana Legislature.

Click here to review the most recent statistics from the IBDPR.

Note: All information about children and families in the IBDPR is confidential so that these families’ rights are respected.

HIPAA Notice of Privacy Practice - Genomics & Newborn Screening Program

Click here to read the HIPAA Notice of Privacy Practice for the ISDH Genomics & Newborn Screening Program.

Click here to read the HIPAA Notice of Privacy Practice in Spanish.

Why is the data needed?

  • To help parents of infants with special health care needs get necessary services.
  • To find ways to prevent or reduce the impact of certain major 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, screening, and prevention programs.

What happens when a child’s name is reported to the IBDPR?

A hospital or health care provider informs the IBDPR that a child was diagnosed with a birth defect.

The IBDPR does not share confidential information with anyone else. By receiving this information, the Indiana State Department of Health is able to plan services for children with special health or education needs and provide resources to families.

Where to go if you have questions:

If your child was born with a birth defect, your child’s doctor may have discussed with you the specific aspects of your child’s medical condition. However, there may be additional services and support available to you, your child, and your family.

Click here for a list of resources that may be useful to your family.

If you have any questions, please contact your doctor.