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 a health care provider, it is your job to help guide families through this process. Making sure they know the purpose of the screening and the procedure is essential to eliminating confusing and ensuring the best possible outcomes.
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.
As a provider, you will be the one receiving the results, perhaps from the hospital where the birth occurred. It is important to assure the parents that a re-screen does not automatically mean something is wrong. There are a number of reasons that a re-screen may be required, including:
- Something was wrong with the sample
- Sample was drawn too early
- A blood transfusion was received before the sample was collected
- There was an abnormal test result indicating there may be a disorder
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
Iowa Newborn Screening Program Timeliness in Newborn Screening Webinar
Click on the link below to access the recorded webinar and PowerPoint slides.
Nursing CEUs are not available for watching the recorded presentation.
PowerPoint presentation 1-13-2016
Recorded Timeliness in Newborn Screening Webinar 1-13-2016
SHL Web portal
More information for you and your patients:
The following video was produced by the Iowa State Hygienic Lab in conjunction with University of Iowa graduate student, Erin O'Gara. It answers some of the most common questions that providers may have about the dry blood spot screen.
In Iowa, the following disorders are required to be screened for by law:
- Congenital adrenal hyperplasia
- Congenital hypothyroidism
- Cystic fibrosis
- Expanded Panel Disorders
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.
When a possible disorder has been detected, you or another health care provider will be notified. By intervening early, complications from these disorders can be prevented.
Storage and use of Residual Newborn Screening Specimens
In the screening process, there may be a leftover specimen. The use and storage of this residual newborn screening specimen should be disclosed to the patient.
The following are questions that they may have throughout the process:
Key information for your patients:
- 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
Collaboration is essential to continue to establish best practice in the treatment of newborn screening disorders. Public health studies and research may be done only if the researchers follow these guidelines:
- The researcher must obtain informed consent from the parent of guardian for the release of residual newborn screening specimens for research purposes.
- 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.
To submit a proposal or find out more information, please contact the INSP Executive Officer at 1-800-383-3826.
Refusal of Newborn Screening
It is possible for people to refuse screening, though it is important that education on the importance of screening is emphasized before the decision is made. If the family still chooses to refuse screening, you will have them sign the refusal form, and then fax it to the Short-Term Follow Up Staff at 1-319-384-5116 1-319-384-5116.
Newborn Screening Refusal Form
Newborn Screening for Critical Congenital Heart Disease
Congenital heart disease is imperative to identify and treat as soon as possible. Critical congenital heart disease (CCHD) in particular may require surgical or medical intervention in the first year of life. Almost all types of known congenital heart defects can be surgically repaired or palliated. Due to best practice advancements, survival rates continue to improve.
For the above reasons, 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.
As a provider, you play a key role in both executing early diagnosis and timely intervention and contributing to their continued improvement. 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.
Though pulse oximetry is the agreed upon approach, it is important to inform parents and caretakers that a negative test result does not exclude the possibility of a heart defect.
Materials for you to consult and share with your patients:
Special Medical Formula and Food Program
If you have a patient that is diagnosed with an amino acid or organic acid inherited disorder, they may need extra assistance with lifestyle adjustments associated with the disorders. Since they are only able to eat limited protein, specialized food can get incredibly expensive. The Special Medical Formula and Food Program identifies individuals, while the services are provided by the University of Iowa because of their contracts with the formula provider.
Lisa Neff-Letts, Program Manager firstname.lastname@example.org
Stead Family Iowa Children's Hospital
Division of Medical Genetics