Iowa Registry for Congenital and Inherited Disorders Narrative

State Appropriation $36,839

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.

IRCID operations 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. In 2020, Dr. Romitti and faculty in the Carver College of Medicine began conducting surveillance of birth defects related to maternal severe acute respiratory syndrome coronavirus 2 (SARSCoV2) infection during pregnancy. Securing these grants and contracts requires annual funding to support the IRCID surveillance infrastructure.

Education and health promotion efforts that use IRCID data include lectures, press releases, articles, public service announcements, and educational materials. Annually, 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, IRCID implemented a program to engage the Iowa community by providing parents of live born children diagnosed with birth defects resource materials and the opportunity to be referred to clinical, educational, and social services.

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. 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). IRCID has been an active member of the NBDPN since 1997. Dr. Romitti, IRCID Director, has served as a member of the NBDPN Executive Committee, and as NBDPN President-Elect (2013), President (2014-15), and Immediate Past President (2016). He received the prestigious Godfrey P. Oakley Jr. Award in 2020 for significant lifetime contributions to the field of birth defects. In 2013, IRCID was accepted as a full program member in the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR). Dr. Romitti was elected as Vice Chair of the ICBDSR Executive Committee in 2017 and as Chair from 2018-2021. Participation in the NBDPN and ICBDSR has allowed IRCID to engage with national and international partners, including the World Health Organization. The state of Iowa appropriation to IRCID is used to support reporting and sharing of IRCID data with these partners to advance for birth defect surveillance, research, and primary prevention activities.