States North Dakota
Conditions Screened
North Dakota currently screens for 39 conditions
The North Dakota Program
Each state runs its program differently, for more detailed information please visit their website here.
Download Brochure
Here is a brochure for the state of North Dakota. Brochure »
What Conditions are Screened For in North Dakota?
Amino Acid Disorders
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Citrullinemia, Type I (CIT)
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Classic Phenylketonuria (PKU)
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Homocystinuria (HCY)
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Maple Syrup Urine Disease (MSUD)
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Tyrosinemia, Type I (TYR I)
Endocrine Disorders
Fatty Acid Oxidation Disorders
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2,4 Dienoyl-CoA Reductase Deficiency (DE RED)
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Carnitine Uptake Defect (CUD)
Hemoglobin Disorders
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S, Beta-Thalassemia (Hb S/ßTh)
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S, C Disease (Hb S/C)
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Sickle Cell Anemia (Hb SS)
Lysosomal Storage Disorders
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Mucopolysaccharidosis Type-I (MPS I)
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Pompe (POMPE)
Organic Acid Conditions
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Glutaric Acidemia, Type I (GA-1)
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Isobutyrylglycinuria (IBG)
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Isovaleric Acidemia (IVA)
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Propionic Acidemia (PROP)
Other Disorders
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Biotinidase Deficiency (BIOT)
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Classic Galactosemia (GALT)
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Cystic Fibrosis (CF)
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Galactoepimerase Deficiency (GALE)
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Galactokinase Deficiency (GALK)
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Hearing loss (HEAR)
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Spinal Muscular Atrophy (SMA)
Search Educational Resources
Looking for resources? Check out our Newborn Screening Education and Training Resource Center.
About Newborn Screening in North Dakota
Program Overview:
Newborn Screening consists of three parts: Blood Spot, Hearing and Pulse Oximetry Screening. It is recommended that all babies in North Dakota (ND) receive all three screenings at 24 hours of age. Every baby born in ND is required by state law to complete newborn blood spot screening, which is a blood test that identifies nearly 40 primary conditions. Babies with these disorders may look and act like a healthy newborn but may have a medical condition that can cause serious illness, disability or even death if not identified early. Treatment is available for all the disorders screened for and most babies identified early can grow up to be healthy.
Blood spot screening is performed by taking a few drops of blood from a baby’s heel 24 to 48 hours after birth and placing it on a blood spot card for testing. The North Dakota Newborn Screening Program (NDNSP) has designated the University of Iowa State Hygienic Laboratory (SHL) as the central screening laboratory for the program. ND medical consultants work closely with the NDNSP and Iowa Newborn Screening Program staff to assist health care providers in ND to confirm or rule out a newborn’s diagnosis and recommend treatment and follow-up care for infants.
Results for the hearing and pulse oximetry screenings are available immediately and will be shared with the parent/guardian prior to discharge. The blood spot screening results take a few days to process and the baby’s primary care provider will communicate the results with the parent/guardian when they are available. Parents are encouraged to ask about their baby's screening results at the first well baby visit.
How is Newborn Screening Paid for in North Dakota?
The current newborn screening fee in ND is $122 and is often included in the billing for hospital stay when delivering a baby. For out of hospital births, a check can be mailed to the SHL for payment. The screening laboratory charges the facility/screener and the facility in turn bills the insurance company. The screening laboratory does not charge for repeat screens.
Policies and Resources
Opt-Out:
While it is highly discouraged, a parent/guardian may refuse newborn blood spot screening. Prior to refusing, the parents must have received written information about newborn screening. Parents will need to complete a refusal form, which can be found on the NDNSP website. A copy of the refusal form must be sent to the NDNSP within six days after testing was refused.
Support for families:
If a child is identified with a condition through newborn screening, there are programs within Special Health Services that can assist parents with the costs for diagnostic and treatment services. If a child is confirmed with a condition, long-term follow-up services are available for families to assist them in navigating a new diagnosis by connecting them with additional services and resources that can benefit the patient and family.
For a child or individual diagnosed with a metabolic condition, the cost of medically necessary foods can be quite significant. Special Health Services provides medical food and low-protein modified food products to individuals with Phenylketonuria (PKU) and Maple Syrup Urine Disease (MSUD). For more information on metabolic foods, visit https://www.hhs.nd.gov/health/children/metabolic-food or call (701) 328-2436 or (800) 755-2714 (TTY).
Storage and Use of Dried Blood Spots:
After testing is completed, the dried blood spot cards are returned to the NDNSP and are stored at a secure location in ND. The blood spot cards are destroyed after a child turns 18 years old.
Families may benefit from having their baby’s dried blood spot card stored. If a child gets sick, the blood spot can give an idea if something at birth made the child sick. A blood spot may also be used to identify a missing or deceased child or if the parents request information for future pregnancies. Research will not be done on a baby’s blood spot card without parental consent.
If a parent would like their baby’s blood spot card returned to them and not be stored, they may complete the request form on the NDNSP website. Storage, destruction, and further testing is the responsibility of the parent/guardian if the card is returned to them.
To see a copy of the blood spot card used in North Dakota click here.