Iowa Registry for Congenital and Inherited Disorders Narrative

State Appropriation $37,370

In the United States (US), every 4½ minutes, a child is delivered with a major birth defect. Major birth defects are abnormalities of an organ structure or function that result in physical disability, mental disability, or death. They also are a leading cause of infant mortality and contribute substantially to morbidity and long-term disability, as well as the expenditure of millions of dollars annually in health care costs.

The Iowa Registry for Congenital and Inherited Disorders, or IRCID (formerly the Iowa Birth Defects Registry), was established by the Iowa General Assembly (Chapter 23 of the Iowa Code) in 1983 to maintain statewide surveillance for birth defects and to monitor trends in birth defect occurrence and mortality. Data collected permit comparison of birth defect rates in geographic areas of interest (e.g. cities or counties) with state and national rates. In addition, data are used to monitor trends in birth defect occurrence by population characteristics such as maternal age. Statewide surveillance is necessary to accurately evaluate such trends and to guide health promotion and birth defect prevention efforts in Iowa.

The operations of the IRCID are chartered to The University of Iowa. As such, a number of faculty investigators and public health professionals utilize IRCID data to: 1) conduct research to identify risk factors for birth defects; 2) promote education activities for the prevention of birth defects; and 3) provide outreach to patients and families to appropriate clinical, educational, and social services. As examples, since 1996, Dr. Paul Romitti, IRCID Director, College of Public Health and faculty in the College of Public Health and Carver College of Medicine have been funded as a ‘Center for Excellence in the Research and Prevention of Birth Defects’ in Iowa. In 2016, Dr. Romitti and faculty in the Carver College of Medicine led the efforts in Iowa to identify birth defects related to maternal Zika virus infection.

Education and health promotion efforts that use IRCID data include lectures, press releases, articles, public service announcements, and disseminating educational materials. Annually, the IRCID provides a web-based report to disseminate information regarding congenital and inherited disorder surveillance, research, and prevention efforts ongoing in Iowa. Collaborating with the Iowa Department of Public Health, the IRCID implemented a program to engage the Iowa community by providing parents of live born children diagnosed with birth defects resource materials and referrals to appropriate clinical, educational, and social services.

The IRCID is a public health registry in vigorous pursuit of promoting the health and welfare of infants and children in Iowa, serving families in all 99 counties. The IRCID has served as a model for other states establishing birth defect surveillance programs and received national recognition for its role in birth defect surveillance, including the State Leadership Award from its peer registries in the National Birth Defects Prevention Network (NBDPN). The IRCID has been an active member of the NBDPN since 1997. Dr. Romitti, IRCID Director, served as a member of the NBDPN Executive Committee, and as NBDPN President-Elect (2013), President (2014-15), and Immediate Past President (2016). In 2013, the IRCID was accepted as a full program member in the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR). Dr. Romitti was elected as the Vice Chair of the ICBDSR Executive Committee in 2017 and as the Chair in 2018. Participation in the NBDPN and the ICBDSR has allowed the IRCID to engage with national and international partners, including the World Health Organization. Funds received through the state of Iowa appropriation and birth certificate fee revenue are critical to comply with code surveillance requirements.