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Iowa Newborn Screening Program

Our newborn screening program seeks to identify possible disorders present at birth so that intervention can occur as early as possible and complications can be avoided. As part of the IDPH team, you may be assisting making sure that the proper protocols are in place for screening to happen as quickly and effectively as possible.

The newborn screening specimen should be collected at 24 to 48 hours after birth. These results should then sent to the State Hygienic Laboratory within 24 hours of collection, using the state-provided courier service. It is imperative that if a re-screen is necessary it is done promptly, as many of these disorders can cause damage in a short period of time.

Click here for Iowa Newborn Screening Quick Facts!

Courier Program

For questions relating to the transport of newborn screening dried blood spot cards please contact Central Delivery Service of Iowa at 515-289-9990  http://www.cdsofiowa.com/contactus.html

For more information:

Newborn Screening Panel of Conditions

In Iowa, the following disorders are required to be screened for by law:

  • Biotinidase
  • Congenital adrenal hyperplasia
  • Congenital hypothyroidism
  • Cystic fibrosis
  • Expanded Panel Disorders
  • Galactosemia
  • Hemoglobinopathies

When the specimen is sent to the State Hygienic Laboratory at the University of Iowa, it is tested for a large variety of disorders. The full list is available on their website. It can be seen here.

Storage and Use of Residual Newborn Screening Specimens

In the screening process, there may be a leftover specimen.  The following are questions that people may ask you about the storage of the specimens

Key information:

  • The State Hygienic Lab tests for over 50 different disorders
  • Iowa law allows residual newborn screening specimens to be stored for five years in a locked, secure facility at the SHL lab in Ankeny, Iowa. After this time the blood spots are destroyed.
  • All identifying information is protected by being stored separately and given a unique identification number.
  • They can find more information here on our website.

What are they used for?

  • To monitor quality of testing and accuracy of results
  • To make sure that improved testing methods are running properly
  • To be accessed later on if a health problem develops

Research Requests

Collaboration is essential to continue to establish best practice in the treatment of congenital disorders. Public health studies and research may be done only if the researchers follow these guidelines:

  • The researcher must have informed consent from the parent or guardian for the release of residual newborn screening specimens.
  • The project must be done to help develop a new newborn screening test or to better understand diseases for the benefit of the general public.
  • The baby's name and any identifying details about the baby are removed before the sample is provided.
  • The project must be approved by the Institutional Review Board (IRB) where the researcher works to make sure it meets high ethical standards and to ensure that the privacy and safety of the babies is fully protected.
  • The project must be approved by the Congenital and Inherited Disorders Advisory Committee to make sure it meets high ethical standards and to ensure that the privacy and safety of the babies is fully protected.
  • The project must be approved by the Iowa Department of Public Health to make sure all privacy and confidentiality laws are being followed.

If someone approaches you about conducting research, please Kimberly Piper at kimberly.piper@idph.iowa.gov1-800-383-3826.

Newborn Screening for Critical Congenital Heart Disease

Iowa law requires every newborn to be screened for CCHD prior to discharge from the hospital, or after 48 hours of age.  Iowa Administrative Code 641 IAC 4 describes the requirements for newborn screening for CCHD.

There have been a number of noteworthy announcements in recent years regarding CCHD:

  • August 2009: American Academy of Pediatrics (AAP) and the American Heart Association (AHA) conclude that pulse oximetry is a viable strategy to improve early detection of CCHD.
  • September 2010: US Health and Human Services Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) recommended that CCHD be added to the newborn screening panel. They recommended 7 specific targets: hypoplastic left heart syndrome (HLHS), pulmonary atresia, Tetralogy of Fallot,, total anomalous pulmonary venous return, transposition of the great arteries, tricuspid atresia and truncus arteriosus.
  • January 2011: A work group chosen by the SACHDNA, APP, AHA and the American College of Cardiology came together to create recommendations for a standardized approach to screening and diagnostic follow-up, which can be seen here.

Materials for your use:

Special Medical Formula and Food Program

Another program that we oversee is the special medical formula and food program for individuals who have been diagnosed with an amino acid or organic acid inherited disorder. See the latest annual report to learn more.

Other resources: