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Center for Congenital and Inherited Disorders

Children at Play

Congenital and Inherited Disorders Programs

Mission Statement

The State of Iowa genetic service programs have a unified message, the need to advance the health and well being of children with genetic conditions and special health needs in partnership with families, health and human service providers and communities.

Purpose

To provide the structure through which comprehensive genetic health care services, laboratory services and surveillance will be developed and implemented as an integral component of the state's health care system.

To assure the provision of statewide genetics education in order to promote health and prevent disease.

To develop policies and programs that assure availability of and access to quality genetic health care and laboratory services.

The Center for Congential and Inherited Disorders consists of several programs. The state coordinator for Genetic Services provides oversight to all of these programs.

Iowa Registry for Congential and Inherited Disorders Per legislated mandate, birth defects occurring in Iowa are reportable conditions and records of these birth defects are abstracted and maintained in a central registry. The parent or legal guardian is notified by letter that this information has been collected and provides information about services for which the child and family may be eligible. The program monitors the occurrence and trends of birth defects, conducts thorough and complete epidemiological surveys, assists in the planning for and provision of services to children with birth defects and their families, and identifies environmental and genetic risk factors for birth defects.

Iowa Neonatal Metabolic Screening Program (INMSP) Per legislated mandate; the INMSP provides early identification of genetic and metabolic disorders by screening all newborns in the state of Iowa. The program also provides comprehensive follow up, treatment, and education to individuals and their families affected with genetic and metabolic conditions in order to avoid adverse health consequences such as mental retardation and death.

Neuromuscular and Related Genetic Disease Program (NFP) The neuromuscular program provides comprehensive services for individuals and families with neuromuscular disorders through statewide outreach clinics. Comprehensive services may include diagnostic evaluations, confirmatory testing, consultation with board-certified neurologists, genetic counseling, medical and case management, education, physical therapy, and referral to appropriate agencies to assist in meeting the unique physical, social, and psychological difficulties faced by this group of patients.

Regional Genetic Consultation Service (RGCS)  The RGCS program provides comprehensive genetic services for individuals and families with a birth defect or genetic disorder such as cystic fibrosis, congenital heart disease, cleft lip/cleft palate, Down syndrome, etc. This service is provided through statewide outreach clinics. Genetic services may include diagnostic evaluations, confirmatory testing, consultation with board-certified geneticist, genetic counseling, medical and case management, education, and referral to appropriate agencies to assist in meeting the unique physical, social, and psychological difficulties faced by this group of patients.

Iowa Stillbirth Surveillance Project (ISSP) and prevention programs  In 2003, legislation was passed directing the Iowa Department of Public Health to establish a work group to develop a standardized stillbirth evaluation protocol and make recommendations for the surveillance of stillbirths occurring in Iowa. The Center is also work with the Centers for Disease Control and Prevention (CDC) to expand the existing Iowa Registry for Congenital and Inherited Disorders to include surveillance for fetal deaths (a.k.a. stillbirths). Information collected will be analyzed for trends in fetal deaths occurrences, with the hope that prevention initiatives can be developed.

Iowa Early Hearing Detection and Intervention (EHDI) Iowa's Early Hearing Detection and Intervention Program works to ensure that all newborns and toddlers with hearing loss are identified as early as possible and provided with timely and appropriate audiological, educational, medical intervention and family support. The EHDI program is also dedicated to providing unbiased support to families of children who are deaf or hard of hearing.

Family Health History InitiativeWhat is family history? Family history can be defined as a family's combination of shared genes, environment, behaviors and culture. Why should you determine your family's health history? A family health history can:

  • Help you learn about diseases or conditions that you may be at an increased risk for developing;
  • Point out behaviors (smoking, inactivity) or environmental exposures (secondhand smoke, farm chemicals) that may be increasing your risk for disease and that should be changed; and
  • Help you take advantage of appropriate screening tests (BRAC1, mammography, blood pressure checks) that may detect problems early.

The resources on this page can help you get started in determining your or your patient's family health history.


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