Center for Congenital and Inherited Disorders (CCID)


We are your hub for public health genetics and genomics programs at the Iowa Department of Health and Human Services. Under the umbrella of the Center for Congenital and Inherited Disorders, we provide oversight for several different programs relating to inherited conditions. For more information about each program, click on the program link on the left.

If you have any questions about any of our programs, please do not hesitate to call us at 1-800-383-3826. 


Iowa Newborn Screening Program fee increase 

Center for Congenital and Inherited Disorders Policy # 008

Release of Newborn Screening Results as Proof of Sickle Cell Trait Status


The National Collegiate Athletic Association (NCAA) requires all student athletes in Division I, II, and III colleges and universities to provide their school with documented results from a previous sickle cell solubility test, or they must undergo testing during their preparticipation medical examination. Many collegiate institutions accept newborn screening hemoglobinopathy test results as this documentation of the student athlete’s sickle cell trait status.

Evidence and Experience

Newborn screening is a screening test, conducted with the aim to provide information about the newborn’s risk of having a congenital or inherited condition. Newborn screening does not provide diagnostic testing, and newborn screening results are not confirmation of a congenital or inherited condition. Newborn screening does not provide information about an adult’s risk for a condition.

The test methodology for newborn screening for hemoglobinopathies in Iowa does not include solubility testing; rather hemoglobinopathy screening is conducted by high-performance liquid chromatography (HPLC), or hemoglobin electrophoresis.

The Iowa Newborn Screening Program (INSP) has previously provided newborn screening results to student athletes (or their parent/guardian if under 18 years of age) upon request and verification of their identity, or to the student athlete’s health care provider.

Verifying a student athlete’s identity, searching for and verifying the student’s newborn screening results, and sending the results report to the student athlete has become increasingly burdensome, as the number of requests has increased exponentially.

In addition, by providing their entire newborn screening results report to the school, the student athlete is sharing personal information beyond just the sickle cell trait (hemoglobinopathy) test results.

Based on the above evidence and experience, the Iowa Newborn Screening Program will no longer provide newborn screening results to student athletes as a means to satisfy the sickle cell trait reporting requirements of the NCAA.


If the student athlete is requesting their newborn screening results for their own purposes, the student athlete should work with their health care provider to obtain their newborn screening results. The Iowa Newborn Screening Program may be reached at 1-866-890-5965 or 319-384-5097.

If the student athlete is unable to work through their health care provider, they may call 1-866-890-5965 or 319-384-5097 for assistance.

Requests may be made via phone, email, fax, or postal mail to: Iowa Newborn Screening Program

200 Hawkins Drive, W130 GH Iowa City, IA 52242 Fax 319-384-5116

The INSP may take up to 30 days from receipt of the form to fill the request.