States North Dakota

Conditions Screened

North Dakota currently screens for 51 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?

Contacts

Newborn Screening Program

Joyal Meyer
Newborn Screening Program Director
Division of Special Health Services 
600 E Boulevard Ave Dept 301
Bismarck ND 58505-0200
Phone: (701)-328-4534
Email: jbmeyer@nd.gov

Amy Burke
Nurse Consultant
Phone: (701)-328-2784
Email: arburke@nd.gov

NBS Laboratory

Stan Berberich
State Hygienic Lab
University of Iowa
Phone: (515)-243-0141
Email: stanton-berberich@uiowa.edu

Early Hearing Detection and Intervention

Special Health Services
Department of Health
600 East Blvd Avenue Department 301
Bismark, ND 58505-0200
Phone: (701)-328-2436
Fax: (701)-328-1645

Minot State University
NDCPD - ND EHDI
500 University Ave W
Minot, ND 58707
Toll Free Phone: 800-233-1737
Local Phone and TTY: 701-858-3580
Fax: 701-858-3483
Email: ndehdi@minotstateu.edu
EHDI Website: https://www.ndcpd.org/ehdi/index.shtml

Search Educational Resources

Looking for resources? Check out our Newborn Screening Education and Training Resource Center.

VIEW RESOURCES

About Newborn Screening in North Dakota

Program Overview:

The purpose of the Newborn Screening Program is to test all newborns in North Dakota for early signs of a number of treatable conditions as required by North Dakota law. The testing is performed by taking a few drops of blood from a baby’s heel a few days after birth. The blood is placed on a blood spot card and is sent to a laboratory in Iowa 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. The North Dakota medical consultants work closely with the Iowa Newborn Screening Program staff to assist health care providers in North Dakota to confirm or rule out a newborn’s diagnosis and recommend treatment and follow-up care for infants.

This simple blood test provides important information about your baby's health that you or your health care provider may not see just by looking at them. Babies with these disorders may look and act like a healthy newborn, but may have a serious medical condition that could cause serious illness, disability or death. With each of these conditions there is an "invisible" problem in one of the many chemicals that are produced naturally in the baby's body. By using special laboratory tests, infants who have a condition may be identified early and the health care provider is notified of a potential condition immediately. With early diagnosis and treatment, complications from these serious conditions can usually be prevented.

With newborn screening, your baby will have one of two possible results: normal or abnormal screening result. If your health care provider asks you to bring your baby in for follow-up testing, do so as soon as possible. A “retest” is not the same as saying your child tested positive for a condition, as many factors may have contributed to this abnormal result. However, if the second test indicates your child may have a condition, prompt action is very important. If you don't have a telephone, it will be helpful to leave the phone number of a friend, relative or neighbor with the health care provider before you leave the hospital. Notify your health care provider immediately if you move soon after the baby is born.

How is Newborn Screening Paid for in ­­North Dakota?

As stated by law the screening laboratory, which is selected by the department, may charge fees for necessary services. The current newborn screening fee is $75.00 and the SHL bills the facilities, who in turn bill the third party payers. The SHL does not charge for repeat screens at this time.

Policies and Resources

Opt-Out:

While it is highly discouraged, a parent may refuse for any reason to have their newborn tested. 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 NDDoH within six days after testing was refused.

Support for families:

One of the concerns some parents have after learning about their child’s condition is the cost of treatment. Fortunately, North Dakota provides various programs to help ease the financial burden on families and individuals living with these conditions. After diagnosis, the North Dakota Department of Health (NDDoH) is available to refer individuals or families to public and private health care providers that can assist in long-term follow-up services.

One of the most expensive aspects of providing for a child or individual with a metabolic condition is the purchase of medically necessary foods that are specifically tailored to the needs of those living with the condition. Special Health Services (SHS) provides medical food and low-protein modified food products to individuals with Phenylketonuria (PKU) and Maple Syrup Urine Disease (MSUD). SHS provides medical food at no cost to males under age 26 and females under age 45 who are diagnosed with PKU or MSUD, regardless of income. If an individual with PKU or MSUD is older than the limits for free medically necessary food, SHS offers the products for purchase at cost, regardless of income. For more information, contact

Special Health Services
North Dakota Department of Health
600 East Boulevard Avenue, Dept. 301
Bismarck, ND 58505-0200
Phone: 701.328.2436 or 800.755.2714 (TTY: 800.366.6888)
Fax: 701.328.1645.
Email Address: dohcshsadm@nd.gov

In addition to the government-sponsored programs, all private insurers in North Dakota are required to cover the cost of medical foods and low protein modified food products as part of their prescription drug coverage. The insurance company will cover up to $3,000 in medical food costs the same way they cover your prescriptions under your plan, meaning there may be a copay or similar small fee. However, if the individual is eligible to have their medical foods or low-protein modified food products covered by a state program, such as SHS mentioned above, the private insurance company is not required to also cover the same services since they are available from the state.

Storage and Use of Dried Blood Spots:

After testing, the dried blood spot cards are returned to the North Dakota Department of Health and are stored at a secure location in North Dakota. The blood spot cards are destroyed after your 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. At no time would any research be done on your baby’s blood spot card without parental consent.

If you would like your baby’s blood spot card returned to you and not be stored, please complete the request form that can be found on the Newborn Screening Program website or ask your health care provider for more details. Storage, destruction, and further testing would be your responsibility if the card is returned to you.

To see a copy of the blood spot card used in North Dakota click here.

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