Iowa Registry for Congenital and Inherited Disorders

The Iowa Registry for Congenital and Inherited Disorders collects information about infants born with birth defects for the promotion of the health of Iowans by enabling prevention education and connecting families. The University of Iowa, the Department of Human Services and our staff at the Iowa Department of Public Health collaborate on the mission of the registry to:

• Maintain statewide surveillance
• Monitor annual trends
• Conduct research to identify risk factors
• Promote educational activities for the prevention of birth defects

The registry has received national recognition for its role in birth defects surveillance, research and education.

Research produced from the program typically surrounds genetic and environmental risk factors to determine potential causes and treatment protocols for the birth defects including Down syndrome, congenital health defects, neural tube defects and cleft lip and palate. If you are interested in conducting research using the registry, a number of protocols are in place. Please consult the research tab to learn more. Together, we can pave the way for improved health outcomes for children in Iowa.

Want more information?

• Iowa Registry for Congenital and Inherited Disorders - 2021 Annual Report
• Resource Brochure for Families of Infants and Toddlers with Special Health and Education Needs
• Iowa Registry for Congenital and Inherited Disorders Frequently Asked Questions
• Birth Defects Tracking and Prevention Report by Trust for America's Health 
• 641 Iowa Administrative Code, Chapter 4 - Iowa Registry for Congenital and Inherited Disorders
• Iowa Code Chapter 136A Center for Congenital and Inherited Disorders and enter Chapter 136A.
• Iowa Registry for Congenital and Inherited Disorders or call (866) 274-4237
• Iowa Registry for Congenital and Inherited Disorders - 2009 Annual Report

Reportable Conditions

In Iowa, birth defects, neuromuscular disorders, metabolic disorders and stillbirths are reportable conditions and are recorded to the registry.

Birth defects are the leading cause of infant mortality in the United States. About 367 pregnancies per 10,000 are affected each year with a birth defect. A few examples include:

• Congenital heart defects
• Spina bifida
• Cleft lip/cleft palate
• Muscular dystrophy
• Down syndrome

After registered, multiple sources are used to identify infants born with birth defects. Diagnosis, prenatal exposures, prenatal testing and family history trends are all monitored to investigate potential causes.

Confidentiality during this process is incredibly important and rigorously maintained. To learn more about this confidentiality, consult Chapter 22 – Confidential Records. As the practitioner, you are an important part of this confidentiality.

Parent Notifications

You and your patient will receive a notification letter and resource information within six months of being identified if your child is placed on the registry as mandated by Iowa Administrative Code. This requirement came about after advocacy from parent groups of children with birth defects.

Research

The registry conducts research projects to study genetic and environmental risk factors for birth defects. Examples of birth defects currently studied by the registry include Down syndrome, congenital heart defects, neural tube defects and cleft lip and palate. The University of Iowa Human Subjects Committee oversees all research projects.