To monitor birth defects in the state, the Iowa Registry for Congenital and Inherited Disorders (IRCID) was established in 1983 through the joint efforts of the University of Iowa and the Iowa Department of Health and Human Services. Over the years, IRCID has expanded its surveillance efforts to include lifespan monitoring of muscular dystrophies and congenital heart defects, and monitoring emerging threats to pregnant people, such as infectious diseases. IRCID has collected information for over 60,000 children with a congenital and inherited disorder. This information has been used by health care providers, educators, and researchers to provide treatment and support services, to study risk factors, and to evaluate treatments for congenital and inherited disorders.

The mission of IRCID is to:

• Maintain statewide surveillance and collect information on selected congenital and inherited disorders in Iowa
• Monitor annual trends in occurrence and mortality of these disorders
• Provide data for research studies and educational activities for the prevention and treatment of these disorders

The primary benefit of surveillance is to promote adaptive health strategies and care for Iowa families impacted by birth defects. Each family member may experience the long-term effects of these defects, and IRCID is committed to increasing awareness, executing research, and providing resources for those families seeking education or referral.

Information collected by IRCID is kept confidential, and confidentiality is rigorously maintained so that the rights and welfare of patients and families are not compromised.