News and Updates

Long-Term Follow-Up Announcement

The South Dakota Department of Health, Office of Child and Family Services is pleased to announce the Newborn Screening Program will be expanding its service to include long-term follow-up for diagnosed disorders identified by newborn screening bloodspot testing. This expanded service will be located at Sanford Children’s Specialty Clinic in Sioux Falls, SD.

The Sanford long-term follow-up team will provide care coordination, insight, primary care and specialist communication, support, and referral services to various state and private programs for newborn screening patients and parents. 

The children covered by this service must be a residents of South Dakota and have a disorder found on our screening panel. The program will assist families across all medical institutions and is not limited to Sanford Health System.

Beginning August 1, 2023, the Sanford long-term follow-up program will begin reaching out to physicians and families to enroll our smallest residents. There is no cost to families for this program.

Find more information about Newborn Screening and the disorders included on the newborn screening panel. For additional questions about Newborn Screening and the Long-Term Follow-up program please contact the Newborn Screening Program at

NCAA Collegiate Sports Participation - Proof of Sickle Cell Trait Status

The National Collegiate Athletic Association (NCAA) requires all athletes at Division I and II schools to be tested for sickle cell trait before competing or to sign a written release declining the test. The South Dakota Newborn Screening Program does not provide newborn screening test results.

Newborn screening results may be obtained by contacting the athlete's hospital of birth or their Primary Care Provider (PCP).

Other options for NCAA athletes to obtain proof of Sickle Cell trait include:

  • Requesting a hemoglobin electrophoresis test as part of the sports physical.

  • Discussing other means of obtaining this test with the college athletic department.

For further information about the collegiate athletic requirement for documentation of sickle cell trait testing, please visit the NCAA website.

Implementation of Testing for Pompe Disease

Date: August 24, 2022

From: South Dakota Department of Health Newborn Screening Program and State Hygienic Laboratory at the University of Iowa


Screening for Pompe disease will begin September 1, 2022

Please note the updated implementation date

On July 19, 2022, the South Dakota Department of Health Newborn Screening Program completed the required administrative rule process to begin screening for Pompe disease.

Effective September 1, 2022, the South Dakota Department of Health Newborn Screening Program will begin screening for Pompe disease through the screening process of South Dakota’s contracted laboratory, the State Hygienic Laboratory at the University of Iowa.

On September 1, 2022, the State Hygienic Laboratory at the University of Iowa will begin charging birthing hospitals and providers for Pompe disease testing.

What is Pompe disease?

Pompe disease causes progressive muscle weakness and cardiomyopathy. Pompe disease is caused by pathological variation in the gene GAA, which codes for the enzyme “acid alpha-glucosidase” and which is needed for the normal processing of glycogen. This inability to process glycogen results in the accumulation of glycogen within cells and secondary cellular damage primarily affecting muscle tissues (both skeletal and cardiac). An individual must have two pathologic variations in the GAA gene in order to have Pompe disease (recessive inheritance). Early treatment of babies with infantile-onset Pompe disease is needed to avoid progressive, fatal cardiomyopathy. Without treatment, the infantile form of Pompe disease leads to death within the first two years of life. Later-onset forms of Pompe disease leads to physical disability due to muscle weakness and cardiomyopathy and increased mortality due to cardiomyopathy. Treatment for infantile-onset Pompe includes enzyme replacement therapy to correct the deficiency, as well as multi-disciplinary management of cardiopulmonary complications and functional problems. Treatment for late-onset Pompe disease also includes enzyme replacement therapy, but it is not given until the individual has symptoms.

Newborn screening for Pompe involves the measurement of acid-a-glucosidase (GAA) enzyme activity using Flow Injection Analyses-Tandem Mass Spectrometry (FIA-MS/MS). A screen-positive result for Pompe is detected by a low or absent activity of the GAA enzyme, the biomarker for Pompe disease.

As a reminder, this is a screening test. A false negative or a false positive result must always be considered when screening. Therefore, clinical findings and status should be considered whenever interpreting laboratory results.

  • The newborn screening fee will increase from the current rate of $91.00 to $98.00 on September 1, 2022.
  • There will be no charge for repeat specimens when requested by the South Dakota Department of Health or the State Hygienic Laboratory.
  • The CPT procedure and service code used for the Newborn Screening panel, including Pompe disease screening, is S3620. This is a universal code and is the only code to use per APP and HIPPA.

HCPCS Level II codes are part of the standard procedure code set under the Health Insurance Portability and Accountability Act of 1996. Newborn metabolic screening panel, includes the test kit, postage, and the laboratory tests specified by the state for inclusion in this panel (eg, galactose; hemoglobin, electrophoresis; hydroxyprogesterone, 17-D; phenylalanine [phenylketonuria (PKU)]; and thyroxine, total)

  • NOTE: The appropriate blood collection code (36416). DO NOT bill for each test separately
  • Specimen collection will not change from current procedures - nothing different needs to be done for the collection of the newborn blood spot specimen.
  • Additional Pompe disease information is available upon request. If interested, please contact the South Dakota Department of Health Newborn Screening Program at 605-983-1389. Pompe disease information is also available from the US National Library of Medicine and Baby’s First Test.

Questions regarding Pompe disease screening may be directed to the following individuals:

Questions for the South Dakota Newborn Screening Program

SHL Newborn Screening Laboratory Questions:

Kenneth Coursey
Clinical Lab Supervisor, SHL Newborn Screening Laboratory
Phone: 515-725-1630

SHL Newborn Screen Billing Questions:

John Negley
State Hygienic Laboratory
2490 Crosspark Road, Coralville, IA 52241
Phone: 319-335-4500 Fax: 319-335-4171

Screening Follow-up and Treatment Questions:

Sharina Tveit, RN
South Dakota Newborn Screening Program
Follow-up Coordinator
Phone: 605-312-0976

For All Other Questions:

SD Newborn Screening Program

The South Dakota Department of Health and the State Hygienic Laboratory intend to work closely with you to implement screening for Pompe disease to save lives and improve outcomes for affected infants. Please feel free to contact us with any questions regarding Pompe disease screening.


Beth Dokken
Division Director, Division of Family & Community Health
South Dakota Department of Health
Phone: 605-773-3737

Ken Coursey
Clinical Lab Supervisor, NBS Laboratory
Iowa State Hygienic Laboratory
Phone: 515-725-1628