Center for Congenital and Inherited Disorders (CCID)

Rules, Regulations and Policies

Together, it is our job to protect and promote the health of Iowans. In order to accomplish that, an understanding of Iowa’s laws is required. Explore the various sections below to learn more about these rights and your role in ensuring them, whether it is in the screening, treatment or research of genetic conditions.

Laying the foundation

Iowa laws hold us both in our practices to privacy and disclosure standards. The following chapters are specific to procedures relating to congenital and inherited disorders.

Iowa Code

  • 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

Notice of Intended Action to Amend Rules 641 IAC 4 Congenital and Inherited Disorders.

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

Pioneering research responsibly

Together, we can continue to seek new frontiers in understanding of the understanding of congenital and inherited disorders. To ensure that information is used appropriately and to promote high quality research, in order to obtain access to data from our programs, there is a multistep process in place. First, you must submit the request to members of the Congenital and Inherited Disorders Advisory Committee (CIDAC) where they will vote. Next, the CIDAC chair will submit a summary letter to the director of the Iowa Department of Public Health. Finally, the director submits the request and letter to the State Board of Health who ultimately decide whether to approve or deny the request. It is important to allow ample amount of time for this process. Before submitting a request, if you intend to use blood spots, please reference the policy below to maximize your chances of an approved request.

Genetic Information Nondiscrimination Act (GINA)

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

Much like your practice is governed by the health Insurance Portability and Accountability Act (HIPAA), we also have to function within its bounds. The Privacy Rule permits disclosure of personal health information without individual authorization to these programs in order for our programs to fulfill their functions. 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.

Where can I get more information?

Program listing

Our Mission

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

Iowa Registry for Congenital and Inherited Disorders (IRCID)

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.

Iowa Newborn Screening Program (INSP) 

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.

Neuromuscular and Related Genetic Disease Program (INMP) 

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.

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 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 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 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 Initiative

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.

Congenital and Inherited Disorders

Explore these resources to learn more about the various inherited and congenital disorders for which we advocate.

Information on a variety of genetic conditions may be found at the Human Genome Institute.

Bulletin Board

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