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Center for Congenital and Inherited Disorders

What is the Registry for Congenital and Inherited Disorders?

The Registry for Congenital and Inherited Disorders is the reporting system to identify and monitor birth defects in the state of Iowa. Birth defects are reportable conditions in Iowa and the records of these birth defects are abstracted and maintained pursuant to 641 Iowa Administrative Code, Chapter 4.7(136A).  The registry was established in 1983 through the joint efforts of the University of Iowa, the Iowa Department of Public Health, and the Iowa Department of Human Services.  The program is located within the College of Public Health at the University of Iowa. 

The mission of the Iowa Registry for Congenital and Inherited Disorders is to:

  • maintain statewide surveillance for collecting information on birth defect occurrence;
  • monitor annual trends in birth defect occurrence and mortality;
  • conduct research to identify genetic and environmental risk factors for birth defects; and,
  • 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. In 2002, the Registry received a national grade of "A" for their efforts. The report - Birth Defects Tracking and Prevention: Too Many States Are Not Making the Grade - was authored by Trust For America's Health. The report gives each of the 50 states, plus the District of Columbia and Puerto Rico, a letter grade based on their efforts to monitor and research birth defects.

What is a birth defect?

Birth defects are the leading cause of infant mortality in the United States.  The average rate of occurrence of birth defects in Iowa.  Almost five pregnancies per day are affected by birth defects in our state. Based on a five-year average, 367 pregnancies per 10,000 are affected each year with a reportable birth defect. That's about 1,395 affected pregnancies per year.

A birth defect is defined as a structural, genetic or chromosomal abnormality that can adversely affect the child's health and development.  Examples are congenital heart defects, spina bifida, cleft lip/cleft palate,Muscular dystrophy, and Down syndrome.

Genetic factors, exposure to some drugs or medications, smoking or drinking alcohol during pregnancy or a combination of factors can cause birth defects. For many birth defects, the cause cannot be determined.

What is a fetal death?

Stillbirth means an unintended fetal death occurring after a gestation period of twenty completed weeks, or an unintended fetal death of a fetus with a weight of 350 or more grams.

How does the registry abstract information about birth defects?

The registry uses multiple sources to identify information about infants born with birth defects. Trained personnel review medical records at all Iowa hospitals and specialty clinics. Information such as diagnosis, prenatal exposures, prenatal testing, and family history is collected to help monitor trends and investigate causes of birth defects. Infants born in Iowa on or after January 1, 1983, who have specific birth defects diagnosed at birth or within the first year of life are included on the registry. Stillborn infants with specific birth defects are also registered. The registry only includes infants of mothers who were Iowa residents at the time of their birth.

Confidentiality is rigorously maintained so the rights and welfare of individuals included in the registry are not jeopardized. For more information regarding confidentiality, click on the following link, then enter "22" in the "chapter box".

Iowa Administrative Code-Iowa Registry for Congenital and Inherited Disorders:

How are parents notified that their child is included on the registry?

Parents of children born after January 1, 2003, who are identified by the Iowa Registry for Congenital and Inherited Disorders (registry) will receive a notification letter, as well as resource information within six months of being identified by the Registry.  The child's primary care doctor will also receive a copy of the notification letter.

This system was developed in response to revisions in the Iowa Administrative Code. The Code now directs the Iowa Department of Public Health (IDPH) or its designee to inform parents or guardians in writing that their child’s information has been listed on the registry.  In addition, the Administrative Code directs IDPH to provide the parent or guardian with information about services for their child or family such as early intervention services.

Revisions to the Iowa Administrative Code took place after parents of children with birth defects in Iowa indicated that they would like to know about birth defect surveillance and outreach activities, including the registration of their child, research, and early intervention services.  Prior to this revision, there was not a formal mechanism in place to inform a parent or guardian that their child’s name and medical information had been registered in the Iowa Registry for Congenital and Inherited Disorders.  There was no way to ensure parents or guardians received service and resource information that may benefit their child or family.

How does my family benefit from the registry and its activities?

The registry provides valuable information to the IDPH about the health status of children in Iowa. This enables the IDPH to plan for future services of those with special health or education needs.

The information provided by the Registry has the potential to help identify contributing factors of birth defects and allow for prevention education. The Registry may also connect families to local resources, which in turn may benefit your family by connecting you with other families that have similar circumstances or resources in your community.

What kinds of research does the registry do? 

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.  Family participation in research is critical to determine the potential causes of birth defects.

Participating families typically provide environmental exposure information via mailed questionnaires or telephone surveys.  Some research projects ask for biological samples from the affected child and his or her family members. 

Where do I get more information?

 

You may also use the "Contact Us" page to submit questions online.