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IBDPR-Indiana Birth Defects and Problems Registry


 

 

 

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During January, National Birth Defects Prevention Month -2019, The Indiana Birth Defects and Problems Registry (IBDPR) is excited to present the National Birth Defects Prevention Month (NBDPM) 2019 Digital Toolkit! The goals of NBDPM are to raise awareness about the impact of birth defects on our communities and give healthcare providers tips for preventing birth defects to share with their patients.

2019 IBDPR National Birth Defects Prevention Month Toolkit

Indiana's State Health Commissioner, Dr. Kristina Box, Letter for National Birth Defects Prevention Month

The IBDPR is actively working to raise awareness of how prevalent birth defects are and what steps can help to prevent them.  In the United States, a baby is born with a birth defect every 4½ minutes - about 120,000 babies each year. Birth defects are the second leading cause of death in Indiana. In 2016, 138 Hoosier infants died due to congenital malformations, which accounted for 22% of infant deaths.

The National Birth Defects Prevention Month campaign theme, “Best for You. Best for Baby,” aims to raise awareness of the roughly 2,500 birth defects cases occurring in Indiana each year.

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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 to promote fetal health, prevent birth defects, reduce infant mortality and improve the quality of life of Indiana residents.

About one in every 33 babies is born with a birth defect in the United States, and in Indiana birth defects are the second leading cause of infant deaths. Most birth defects occur in the first three months of pregnancy. This is an important time when tissues are forming. Birth defects range in severity, and the earlier some birth defects are found, the better chance a baby has of living a long and healthy life.

Some birth defects can be prevented, but not all of them. There are steps to take before and during pregnancy that can reduce the risk of having a baby with a birth defect.

 

Make a P.A.C.T. to reduce the risk of birth defects:

  • Plan ahead: see your doctor regularly and take folic acid
  • Avoid harmful substances: don’t drink alcohol, smoke or take drugs and avoid animal droppings, unpasteurized milk products, sick people and insects that carry disease, such as mosquitos
  • Choose a healthy lifestyle: maintain a healthy weight and keep chronic health conditions in control
  • Talk to your healthcare provider: start prenatal care as soon as you think you might be pregnant

Click here for more information about specific birth defects.

What does the IBDPR do?

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 receives the notification from healthcare providers for most conditions 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.

The IBDPR uses these numbers to inform the community on needed resources for healthcare services and prevention programs.

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

Click here to read the full list of reportable conditions. (en español)

Click here to read the 2018 Annual Legislative Report.

Note: All information about children and families in the IBDPR is confidential so that the 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.

Click here to read the Genetic Information Nondiscrimination Act of 2008

    Why is the information needed? 

  • 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 a child's name is reported to the IBDPR? 

A hospital or healthcare provider informs the IBDPR that a child was diagnosed with a birth defect. All information about children and families reported to the IBDPR is kept confidential to respect the rights of families. The IBDPR does not share the confidential information. The Indiana State Department of Health can plan services and provide resources based on the information received.