Medium
Light Grey
Additional Resources

 

Medium
Newborn Screening Brochure Order Form

To order copies of the Newborn Screening Brochure fill out the online order form.

Newborn Screening Refusals and Requests for Return of Specimen

Newborn Screening Refusal Form

Newborn bloodspot screening can help to detect many conditions that could harm a child in the first few days of life. Families have the option to refuse the testing, but are encouraged to discuss this decision with their health care provider prior to refusal. If families would still like to refuse testing, the Newborn Screening Refusal Form must be completed and returned to the program within 6 days of the refusal. 

Newborn Screening Refusal Form

Request for Return of Specimen

A family may request to have the specimen card returned to them following testing. To request to have the card returned, the Request for Access of Protected Health Information (PHI) form must be completed and returned to the program. A clear photocopy of the signer's state issued ID is also required to be submitted with the request.

Request for Access of PHI

List of Disorders

Disorders Screened for in North Dakota

North Dakota Newborn Screening Program List of Disorders
June 2021


Amino Acid Disorders

  • (ASA) Argininosuccinic Aciduria *
  • (CIT) Citrullinemia, Type I *
  • (HCY) Homocystinuria *
  • (MSUD) Maple Syrup Urine Disease *
  • (PKU) Classic Phenylketonuria *
  • (TYR-1) Tyrosinemia, Type I *
  • (ARG) Argininemia **
  • (BIOPT-BS) Biopterin Defect in Cofactor Biosynthesis **
  • (CIT-II) Citrullinemia, Type II **
  • (BIOPT REG) Biopterin Defect in Cofactor Regeneration **
  • (H-PHE) Benign Hyperphenylalaninemia **
  • (MET) Hypermethioninemia **
  • (TYR II) Tyrosinemia, Type II **
  • (TYR III) Tyrosinemia, Type III **

Organic Acid Conditions

  • (GA-1) Glutaric Acidemia, Type I *
  • (HMG) 3-Hydroxy 3-Methylglutaric Aciduria *
  • (IVA) Isovaleric Acidemia *
  • (3-MCC) 3-Methylcrotonyl-CoA carboxylase Deficiency *
  • (Cbl-A,B) Methylmalonic Acidemia (Cobalamin disorders) *
  • (ßKT) ßeta-Ketothiolase Deficiency *
  • (MUT) Methylmalonic Acidemia (Methylmalonyl-CoA Mutase) *
  • (PROP) Propionic Acidemia *
  • (MCD) Holocarboxylase Synthetase Deficiency *
  • (2M3HBA) 2-Methyl-3-Hydroxybutyric Acidemia **
  • (2MBG) 2-Methylbutyrylglycinuria **
  • (3MGA) 3-Methylglutaconic Aciduria **
  • (Cbl-C,D) Methylmalonic Acidemia with Homocystinuria **
  • (MAL) Malonic Acidemia **

Fatty Acid Oxidation Disorders

  • (CUD) Carnitine Uptake Defect *
  • (LCHAD) Long-Chain L-3 Hydroxyacyl-CoA Dehydrogenase Deficiency *
  • (MCAD) Medium-Chain Acyl-CoA Dehydrogenase Deficiency *
  • (TFP) Trifunctional Protein Deficiency *
  • (VLCAD) Very Long-Chain Acyl-CoA Dehydrogenase Deficiency *
  • (CACT) Carnitine Acylcarnitine Translocase Deficiency **
  • (CPT-IA) Carnitine Palmitoyltransferase Type I Deficiency **
  • (CPT-II) Carnitine Palmitoyltransferase Type II Deficiency **
  • (GA2) Glutaric Acidemia, Type II **
  • (MCAT) Medium-chain Ketoacyl-CoA Thiolase Deficiency **
  • (M/SCHAD) Medium/Short-Chain L-3-Hydroxyacyl-CoA Dehydrogenase Deficiency **

Endocrine Disorders

  • (CH) Primary Congenital Hypothyroidism *
  • (CAH) Congenital Adrenal Hyperplasia *

Hemoglobin Disorders

  • (Hb SS) S,S Disease (Sickle Cell Anemia) *
  • (Hb S/C) S,C Disease *
  • (HB S/ßTh) S, ßeta-Thalassemia *
  • (Var Hb) Variant Hemoglobinopathies **

Other Disorders

  • (BIOT) Biotinidase Deficiency *
  • (CF) Cystic Fibrosis *
  • (GALT) Classic Galactosemia *
  • (HEAR) Hearing Loss *
  • (CCHD) Critical Congenital Heart Disease *
  • (SCID) Severe Combined Immunodeficiency *
  • (SMA) Spinal Muscular Atrophy *

Disorders on the ACHDNC recommended panel that ND does not screen:

  • (MPS I) Mucopolysaccharidosis type I*
  • (GSD II) Glycogen Storage Disease Type II (Pompe) *
  • (X-ALD) X-linked Adrenoleukodystrophy*

Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) Recommended Uniform Screening Panel – Core Panel

Secondary Conditions that may be identified during screening: 

  • (DE-RED) 2,4 Dienoyl-CoA Reductase Deficiency **
  • (GALK) Galactokinase Deficiency **
  • (GALE) Galactoepimerase Deficiency **
  • (IBG) Isobutyrylglycinuria **
  • (SCAD) Short-chain acyl-CoA Dehydrogenase **

** ACHDNC Recommended Uniform Screening Panel – Secondary Targets – Screening for the Core Panel of disorders may show information about secondary conditions (by-products of mandatory screening)

The possibility of a false negative or a false positive result must always be considered when screening newborns for metabolic disorder.

Disorder Fact Sheets

The North Dakota Department of Health, Division of Special Health Services, does not assume responsibility for the content obtained from external hyperlinks accessed from this website. Any links to external sources are outside of our domain. Information on external websites does not necessarily reflect the views and opinions of the North Dakota Department of Health or the Division of Special Health Services.

Amino Acid Disorders

Organic Acid Conditions

Fatty Acid Oxidation Disorders

Endocrine Disorders

Hemoglobin Disorders

Other Disorders

Disorders on the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) Recommended Uniform Screening Panel (RUSP) that ND does not screen:

Secondary Disorders that may also be identified during screening:

Newborn Screening Laws

North Dakota Century Code for Newborn Metabolic and Genetic Disease Screening Tests

North Dakota Century Code for Newborn Screening

Newborn Screening Agency Rules

The North Dakota Department of Health, Division of Special Health Services, does not assume responsibility for the content obtained from external hyperlinks accessed from this website. Any links to external sources are outside of our domain. Information on external websites does not necessarily reflect the views and opinions of the North Dakota Department of Health or the Division of Special Health Services. 

How to Collect a Newborn Bloodspot Screening Specimen

Click here to review education about newborn screening and how to collect a blood spot specimen.

Click here for a guide on how to complete the North Dakota Newborn Screening Card.

Blood Spot Card Examples
Blood Spot Card Example

 

Critical Congenital Heart Disease (CCHD)

North Dakota Century Code for Newborn Screening:

Chapter 25-17-06. Pulse oximetry screening for critical congenital heart defects - Exception.

Before discharge of a newborn child born in a hospital with a birthing center, the newborn child must receive a pulse oximetry screening for critical congenital heart defects. The screening requirement of this section does not apply if the parents or guardians of a newborn child object to the screening. The state department of health shall provide medical staff and facilities that provide birthing services with notice regarding this screening requirement. For purposes of this chapter, pulse oximetry screening is not a test under section 25-17-05 and a congenital heart defect detected by screening under this section is not a metabolic disease or genetic disease as those terms are used under this chapter.

Resources for Pulse Oximetry Screening for CCHD:

Additional Helpful Websites for CCHD:

Advisory Committee

The Newborn Screening Advisory Committee represents the interests of North Dakotans and assists in developing programs that ensure the availability of and access to quality genetic health care services by all residents. The committee advises the North Dakota Department of Health regarding newborn screening and makes recommendations about the design and implementation of the newborn screening program. The committee evaluates the addition of new disorders that may be added to the newborn screening panel as approved by the State Health Council.

The committee consists of members from professional groups, pediatricians, family practice physicians, mid-level practitioners, laboratory staff, nurses, midwives, doulas, family members and individuals with an interest in promoting newborn screening services.

The Advisory Committee meets on a quarterly basis via teleconference and has one in-person meeting per year. If you are interested in being a member on this committee, please send an email to nbs@nd.gov.

Newborn Screening Conferences

No Conference planned for 2021. Please check back again.

NCAA Sickle Cell Trait Requirement

The National Collegiate Athletic Association (NCAA) requires that all athletes at Division I and II schools be tested for sickle cell trait before competing or sign a written release declining the test. NCAA information can be found here. The North Dakota Newborn Screening Program (NDNSP) began screening for sickle cell disease and trait(s) in 2003. Athletes born in 2003 or after can request a copy of their newborn screening (NBS) results, which includes sickle cell screening, at no cost.

NBS results can be requested in the following ways:

  • The athlete can contact their hospital of birth directly to request a copy of their Newborn Screening results from their medical record.
  • The athlete requesting the result can submit a request through their primary care provider (or sports medicine provider) to the State NBS program and the results can be sent securely to the provider and then given to the athlete.

Lastly, the athlete can request their Newborn Screening results from the NDNSP by emailing nbs@nd.gov. They must also attach a completed release of information form to the email. The link can be found here.