Center for Congenital and Inherited Disorders (CCID)
Our 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 partnerships with families, health and human service providers and communities
Programs with a 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 Congenital and Inherited Disorders consists of several programs. The state coordinator for Genetic Services provides oversight to all of these programs.
Meet our programs
This program manages and tracks reportable birth defects occurring in Iowa through a central registry. The program is able to monitor the occurrence and trends of birth defects, conduct epidemiological surveys and identify environmental and genetic risk factors for birth defects. Additionally, the program provides communication with parents and guardians about services for which the child and family may be eligible.
The INSP provides early identification of congenital and inherited disorders by screening all newborns in the state of Iowa. The program also provides comprehensive follow-up, consultation, referrals, 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.
The INMP provides comprehensive services for individuals and families with neuromuscular disorders through statewide outreach clinics. Comprehensive services may include diagnostic evaluations, confirmatory testing, consultations with a neurologist, 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.
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 and Down syndrome, through statewide outreach clinics. Genetic services may include diagnostic evaluations, confirmatory testing, consultation with a 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'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 and family support. The EHDI program is also dedicated to providing unbiased support to families of children who are deaf or hard of hearing.
The family health history initiative seeks to highlight the benefits of knowing your health history, including learning about risk for disease induced by genetics or the environment and connecting you to appropriate screening tests to detect problems early. Family history is a family's combination of shared genes, environment, behaviors and culture. Our initiative in Iowa is part of a larger U.S. Surgeon General’s Family Health History Initiative.
Policies and Procedures
In collaboration with the Congenital and Inherited Disorders Advisory Committee, CCID has developed policies and procedures to guide the delivery of its programs. You may click on the name of each policy to read the policy.
CCID Policy 001 Residual Newborn Screening Specimens
CCID Policy 001a Request for Return of Residual Newborn Screening Specimens
CCID Policy 001b Request for Destruction of Residual Newborn Screening Specimens
CCID Policy 002 Release of Data
CCID Policy 003 Management of the Iowa Newborn Screening Panel
CCID Policy 004 Follow-up for Newborns Not Screened at Birth
CCID Policy 006 Newborn Screening of Preterm and Low Birthweight Newborns
Congenital and Inherited Disorders
Explore these resources to learn more about the various inherited and congenital disorders for which we advocate.
Information about specific genetic disorders may be found at the Human Genome Institute website.
State Clinical Genetic Services
The National Coordinating Center for the seven Regional Genetics Networks (NCC) provides a directory of clinical genetic service providers across the country. Each listing provides basic demographic information about the clinic: the clinic name, associated institution, location. Additional clinic specific information is provided, when available, and includes URL, phone number, specialty type, clinical services provided, genetics professionals available at the clinic, and more! In addition to clinic specific information, the Regional Genetics Network (RGN) associated with each clinic is listed. You can find the directory by clicking on this link.
Rules and Regulations
An important part of our job is protecting your rights. Whether it is in collecting information, pioneering research or setting best practice standards in genetic care, your rights are central to our work. Explore the various sections below to learn more about these rights.
Laying the foundation
Iowa Code informs our practice in many ways. Explore the chapters below to see the standards to which we hold ourselves. As we know, reading legislation can be an overwhelming task, so some of the main points are detailed below.
- Iowa Code Chapter 22 - Confidential Records - Information that we collect from you as a provider falls under confidential records according to Iowa Code Chapter 22.
- Iowa Code Chapter 136A - Center for Congenital and Inherited Disorders - This chapter outlines the key functions of our program, including managing state-wide screening programs, establishing a central laboratory, pioneering and supporting continued research, providing genetic education and collaborating with appropriate organizations.
- Iowa Code Chapter 144 - Birth Certificates - This chapter details the process for filing birth certificates of live births with the state.
Iowa Administrative Code
Pioneering research responsibly
Ongoing research is an important part of understanding genetic disorders and pioneering new treatment options. When we receive requests to use screening information for research, it undergoes a multistep process to make sure that it is an appropriate use. This includes review by the Congenital and Inherited Disorders Advisory Committee (CIDAC), the director of the Iowa Department of Public Health and the State Board of Health. With this process, we are able to limit the disclosure of screening information, while promoting high quality research.
On May 21, 2008, GINA was passed by the federal government prohibiting discrimination in health coverage and employment based on genetic information.
HIPAA – It’s the Law
Our programs serve Iowans through preventing and controlling disease, pioneering research and facilitating screening services and necessary treatment. The Privacy Rule of the Health Insurance Portability and Accountability Act (HIPAA) permits disclosure of personal health information without individual authorization to these programs in order to fulfill these functions. We take this information very seriously and it is only accessed on a need basis. For more information, please consult the letters and statements from the Attorney General below. We take pride in upholding the highest confidentiality practices in all of our programs.
- Iowa Registry for Congenital and Inherited Disorder
- Iowa Newborn Metabolic Screening Program
Where can I get more information?
Hemophilia of Iowa, Inc. 2021 Family Education Day
National Tumor Foundation Iowa Chapter Information