To monitor birth defects in the state, the Iowa Registry for Congenital and Inherited Disorders 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 Iowa Registry for Congenital and Inherited Disorders is located within the College of Public Health at The University of Iowa. The Registry conducts active surveillance to identify information about congenital and inherited disorders that occur to Iowa residents. Active surveillance entails the use of field staff who collect information by reviewing medical records in hospitals and clinics in Iowa and in neighboring states that serve Iowa residents.
The mission of the Iowa Registry for Congenital and Inherited Disorders is to: 1) maintain statewide surveillance for collecting information on selected congenital and inherited disorders in Iowa; 2) monitor annual trends in occurrence and mortality of these disorders; 3) provide data for research studies and educational activities for the prevention and treatment of these disorders.
The Iowa Registry for Congenital and Inherited Disorders has collected information for over 40,000 children with various birth defects. This information has been used by health care providers and educators to provide treatment and support services, and by researchers to study risk factors for birth defects and to evaluate treatments for birth defects. The Iowa Registry has recently started surveillance for Duchenne/Becker muscular dystrophy and has identified almost 50 children with that neuromuscular disease.
Data collected by the Iowa Registry for Congenital and Inherited Disorders have been used in several research projects. Many of these projects include mailed or telephone surveys of women who have experienced a pregnancy affected by a birth defect, and, for comparison, women who have not experienced a pregnancy affected by a birth defect. Examples of birth defects studied by the Registry include Down syndrome, heart defects, neural tube defects, and cleft lip and palate.
The Iowa Registry for Congenital and Inherited Disorders also participates in educational programs designed to help prevent the occurrence and recurrence of birth defects. Registry faculty and staff annually present lectures around the state and promote community awareness to students, families, health care workers, and multiple agencies. Awareness training is a cornerstone of our educational program.
Information collected by the Iowa Registry for Congenital and Inherited Disorders is kept confidential using computer security measures and locked files and offices. All staff members are required to sign a pledge to maintain the confidentiality of all information collected. These individuals are also reminded that their pledge remains in effect after the conclusion of their employment. Confidentiality is rigorously maintained so that the rights and welfare of the patients and families are not compromised.
The Iowa Registry for Congenital and Inherited Disorders has received national recognition for its role in birth defect surveillance, research, and education. In 1996, the Iowa Registry was one of only eight registries to receive an award from the Centers for Disease Control and Prevention to establish a “Center for Excellence in the Research and Prevention of Birth Defects”. In 1999 and again in 2002, the Iowa Registry received an “A” rating from the PEW Environmental Commission and the Trust for America's Health, respectively, for its work in birth defect surveillance. In 2003, the Trust recognized the Iowa Registry's continued improvement.
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 consequences of these defects, and the Registry is committed to increasing awareness, executing research, and providing resources for those families seeking education or referral.
One of the goals of our educational services includes awareness training for all interested family members. This includes the circulation of clinical information about specific birth defects, strategies to monitor the impact of birth defects, behavioral management strategies, and/or referral to specific health care professionals, agencies, or academic centers.
Consistent with this goal is the linkage of educational services or the provision of a networking role so families are aware of community supportive services. Specific referrals to statewide services such as the Regional Genetic Consultation Service help families to receive comprehensive genetic health care services and genetics education.
Every year the Registry provides outreach education that parallel national campaigns supported by the National Centers for Disease Control and Prevention (CDC) and the National Birth Defects Prevention Network (NBDPN).
These activities are demonstrated by initiating lectures to students, health care professionals, families, and/or community organizations. Some of these lectures address community concerns about environmental effects on birth defects in addition to genetic influences.
The Registry also promotes community involvement through locally sponsored activities such as the Environmental Health Science Institute research camp for rural youth, Children's Miracle Network, and the Iowa Chapter of the March of Dimes. Public awareness may be initiated with press releases, articles, or educational campaigns in which educational materials are disseminated throughout communities. Residents in each of Iowa's 99 counties have been reached through the combination of our surveillance, research, or educational activities.
Benefits for the State of Iowa
- Applying social and public responsibility to provide accurate, timely data that directs program planning, health policies, birth defects prevention efforts, and welfare of Iowa's infants and children.
- Directing professional role as an innovative research partner to elucidate the roles of genetics and environment impacting birth defects; collaborating to understand the sequelae of birth defects and efficacy of birth defect treatments in greater detail.
- Translating findings about birth defects into adaptive health campaigns/health promotion efforts that public/families can understand and implement.
- Increasing public awareness of birth defect prevention and maintaining public education as a key directive within Registry responsibilities.
- Answering public concerns with health status data available from all 99 counties; maintaining availability to Iowa health care administrators, educators, service providers, and researchers as a mandated health registry and information source to provide birth defects data.
- Fostering communication between agencies involved in surveillance and potential to provide referral services to families in need.
- Facilitating advances within the science of epidemiology.
- Using data to generate micro and macro-level results encompassing local families, statewide Iowa communities, and comparisons of national geographical areas.
- Establishing a “Center for Excellence in the Research and Prevention of Birth Defects” in Iowa and maintaining recognition as an archetype for other registries around the country.