Iowa Registry for Congenital and Inherited Disorders Narrative

State Appropriation $37,370

 

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 and operations chartered to The University of Iowa. Since that time, the IRCID has received national attention for its role in birth defect surveillance and has served as a model for other states establishing birth defect surveillance programs.

The objectives of the IRCID are to maintain statewide surveillance for birth defects and to monitor trends in birth defect occurrence and mortality. These objectives support The University of Iowa’s Strategic Plan goals by allowing us to perform high-impact research and engage with Iowans and the world to improve health and broaden education.

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 disease prevention efforts in Iowa.

The IRCID has been an active member of the National Birth Defects Prevention Network (NBDPN) since the NBDPN was established in 1997. Dr. Paul Romitti, IRCID Director, served as the NBDPN President-Elect (2013), President (2014-15), and Immediate Past President (2016). The IRCID was accepted as a full member in the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) in 2013. Dr. Romitti serves as Vice Chair of the ICBDSR Executive Committee and will serve as Chair in 2019-20.

Taking full advantage of our surveillance infrastructure, the IRCID successfully competed for grant and contract funding to expand its surveillance mission. Beginning in 2002, the IRCID expanded its mission to include surveillance of muscular dystrophies, and later stillbirths (not only those with a birth defect) and selected, confirmed newborn screening disorders. Through these activities, the IRCID serves families in all 99 Iowa counties and received the 2010 NBDPN State Leadership Award.

A number of investigators and public health professionals also utilize IRCID data to:

  • conduct research studies to identify genetic and environmental risk factors for selected congenital and inherited disorders;
  • promote education activities for the prevention of such disorders; and
  • provide outreach to patients and families to appropriate clinical, educational and social services.

As examples, since 1996, Dr. Romitti (College of Public Health) and faculty in the Colleges of Public Health and Medicine have been funded as a ‘Center for Excellence in the Research and Prevention of Birth Defects’ in Iowa. Since 2002, Drs. Romitti and Katherine Mathews (Carver College of Medicine) have been funded to expand surveillance activities to study children with Duchenne and Becker muscular dystrophies, and since 2011, to also study children and adults with one of seven additional muscular dystrophies. Annual renewal of each of these agreements requires identification of funds to support surveillance infrastructure.

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. Also, through collaboration with the Iowa Department of Public Health, the Registry has 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. Overall, the IRCID is a public health registry in vigorous pursuit of promoting the health and welfare of infants and children in Iowa.