Disorder + Link to ACT Sheet | Time Critical |
---|---|
No |
|
2-Methylbutyrylglycinuria (2MBG) |
No |
Yes |
|
No |
|
No |
|
Yes |
|
Yes |
|
Yes |
|
Isobutyrylglycinuria (IBG) |
No |
Yes |
|
No |
|
Methylmalonic Acidemia (Cobalamin Disorders) (Cbl A,B) |
No |
Methylmalonic Acidemia (Methymalonyl-CoA Mutase Deficiency) (MUT) |
Yes |
Methylmalonic Acidemia with Homocystinuria (Cbl C, D, F) |
No |
Yes |
Healthcare Providers
As a healthcare provider or birthing facility, you are a key part of the infant’s care regarding the newborn screen. You play an important role in collecting newborn screening specimens, ensuring appropriate follow-up for out-of-range results, and facilitating diagnostic evaluation as indicated.
For the first three months of life, a provider should verify newborn blood spot screening has been completed and document the results in the child’s medical record. The screening results are not diagnostic. For out-of-range results, follow up procedures are different based upon the disorder and screening results.
The goal for the Newborn Screening Blood Spot Program is to prevent disabilities or death by providing a mechanism for early detection and treatment for infants affected with disorders within the Recommended Universal Screening Panel (RUSP).
The state rules and regulations mandate that every baby born in the state of Oklahoma is to receive Newborn Screening. Those rules can be referenced here.
Thank you for helping care for Oklahoma’s newborns!
Statute 63 O.S. § 1-533 requires the Commissioner of Health to promulgate rules regarding newborn screening. These rules (310:550-5-2) state all newborns in Oklahoma should receive a newborn blood spot screening. A parent or guardian may refuse the screen based on their religious tenets and beliefs. If a newborn screening is refused, a parent or guardian must complete the required refusal form. The signed refusal form should be placed within the infant’s medical record and a copy must be sent to the newborn screening program.
These table are from the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children’s (ACHDNC) recommendations on timeliness in newborn screening and was created based on the Society for Inherited Metabolic Disorders (SIMD) position statement and expert opinion from metabolic geneticists, hematologists, endocrinologist, and pulmonologists.
Disorder + Link to ACT Sheet | Time Critical |
---|---|
Yes |
|
No |
|
Yes |
|
No |
|
Yes |
|
Long-Chain L-3 Hydroxyacyl-CoA Dehydrogenase Deficiency (LCHAD) |
Yes |
Yes |
|
No |
|
Yes |
|
Yes |
Disorder + Link to ACT Sheet | Time Critical |
---|---|
No |
|
Yes |
|
Benign Hyperphenylalaninemia (H-Phe) |
No |
No |
|
No |
|
Yes |
|
No |
|
No |
|
No |
|
No |
|
Yes |
|
No |
|
No |
|
No |
Disorder + Link to ACT Sheet | Time Critical |
---|---|
No |
|
No |
Disorder + Link to ACT Sheet | Time Critical |
---|---|
Yes |
|
No |
Disorder + Link to ACT Sheet | Time Critical |
---|---|
Hemoglobinopathies (Var Hb) |
No |
No |
|
No |
|
No |
|
No |
|
No |
Disorder + Link to ACT Sheet | Time Critical |
---|---|
No |
|
No |
|
Yes |
|
No |
|
Galactoepimerase Deficiency (GALE) |
No |
Galactokinase Deficiency (GALK) |
No |
No |
|
No |
Verify Results
- Abnormal blood spot specimen results will be reported to the follow-up physician designated by the parents per the hospital report. Please note that no contact from the follow-up team does not indicate normal results.
- Normal blood spot specimen results will be located on the newborn screening results web portal.
- For new user access or questions regarding the newborn screening results web portal, please call or email the public health lab:
- (405) 564-7753
- PublicHealthlab@health.ok.gov
Reviewing Results
- Normal results mean no further follow- up is needed currently unless clinical concerns are present.
- Abnormal or unsatisfactory screening results indicate further follow-up testing should be completed. These results do not confirm or deny the presence of a disorder. Please call the NBS Follow-up team for recommendations at (405) 426-8310.
There are a variety of training opportunities and educational resources available to staff. Many resources can be found online following the links below. To request in-person training, please contact the newborn screening program at the bottom of the page:
Online collection training:
- OPQIC training video
- The password to access the training is: OSDHNBS
- CLSI training video
Newborn screening education resources:
- Order filter paper kits
- Order newborn screening brochures
- Order rack cards
- These are ideal to use within offices to initiate conversations surround newborn screening. To order, please email newborn screening with the quantity needed.
- Rack Card example
- Order lancets
- Midwives and county health departments may order lancets for screen collection. Please email requests to newborn screening with the number of lancets requested.
- Where do I find the provider ID to enter on the lab requisition?
- The current newborn screening provider ID numbers can be located here.
- How do I get the screening specimen to the Public Health Lab?
- Blood spot specimens should be sent to the public health lab within 24 hours after collection. They should arrive at the public health lab no later than 48 hours after collection. For hospitals or county health departments, please utilize the courier service. If do not have a courier service available, please mail the specimen to the public health lab using priority mail when possible. Specimens that arrive 14 days after collection are not suitable for testing. If you have questions regarding courier service, please contact the Oklahoma Public Health Laboratory at:
- Phone: 405-564-7750
- Address: 4615 W. Lakeview Rd. Stillwater, OK 74075
- Blood spot specimens should be sent to the public health lab within 24 hours after collection. They should arrive at the public health lab no later than 48 hours after collection. For hospitals or county health departments, please utilize the courier service. If do not have a courier service available, please mail the specimen to the public health lab using priority mail when possible. Specimens that arrive 14 days after collection are not suitable for testing. If you have questions regarding courier service, please contact the Oklahoma Public Health Laboratory at:
- I am unable to locate a newborn screen on the NBSR web portal. What do I do next?
- If the serial number is known, please try entering the serial number only. If you still are unable to locate the infant’s screen, please call the blood spot program at 405-426-8310 to check on results and receipt of specimen. Please note, the follow up staff are unable to send normal screening results but can verbally share results with parents or the primary care provider.
- We entered incorrect information on the lab requisition, how do we get that fixed?
- The submitter will need to contact the public health lab at (405) 564-7750.
- What age baby is appropriate for a newborn screening blood spot?
- Newborn screening specimens can be processed at the Public Health Lab up to 6 months of age. After 6 months of age, please call 405-426-8310 for alternative screening options.
- What does it mean if the screen results are out-of-range?
- These results do not mean an infant has a disorder but may be at a higher risk of being affected.
- Low-risk results require a repeat newborn screening only.
- High-risk results require an immediate consultation with a specialist. Please call the blood spot follow up team at (405) 426-8310 to discuss the results with a nurse.
- What does it mean if the screen results are unsatisfactory for testing?
- These results indicate the specimen was not tested due to improper collection or prolonged transit times.
- I was notified of an out-of-range newborn screening result, but I have never seen the infant in clinic. What do I do?
- Statute 63 O.S. § 1-533 requires the Commissioner of Health to promulgate rules regarding newborn screening. These rules (310:550-17-1) state that the infant’s physician or designee will obtain the required repeat screening or diagnostic testing within the recommended time frame. Please contact the parents or legal guardians to identify the infant’s follow-up provider. When a new provider has been determined, please notify the newborn screening program at 405-426-8310. Please note we are unable to change the provider based on Soonercare assignments.
- If a screening result was out-of-range, does that mean this infant has the disorder?
- Abnormal results do not mean the infant has a disorder. There are many factors that can influence a screen. An out-of-range screen result just indicates that additional testing is needed.
- I am a provider not located within Oklahoma. How do I get the newborn screen results on an infant I am seeing who was born in Oklahoma?
- For infants under one, please fax request for results on clinic letterhead with infant’s name, date of birth, birthing hospital, and mother’s name to 405-900-7556. If the infant is older than one year of age, please fax a signed HIPAA release with the above information on the clinic letterhead.
- The screening report was collected prior to 24 hours old. How should I proceed?
- Prior to 24 hours of age, the screening results will not be reliable for all disorders. It is recommended that a repeat screen be collected at 3-5 days of age.
- What DNA mutations are included in the CF panel run by the state?
- Oklahoma test for 60 cystic fibrosis mutations. The current mutation panel is in the laboratory test directory.
- If only one DNA mutation was found, why does the infant still need a sweat test?
- The panel utilized for testing does not include all known DNA mutations that can cause cystic fibrosis. Oklahoma pulmonologists and the Cystic Fibrosis Foundation agree that the most accurate way to rule out or confirm the diagnosis of cystic fibrosis is by performing a sweat test. Sweat testing and genetic counseling are offered free of charge to Oklahoma families with out-of-range cystic fibrosis screening results.
- The screen results came back low risk for disorder, but I have clinical concerns. How should I proceed?
- The newborn screen is not diagnostic. If you have clinical concerns, please contact the newborn screening program to discuss further recommendations.
Contact Information:
Mailing Address:
Oklahoma State Department of Health
Newborn Blood Spot Screening Program
123 Robert S. Kerr Ave., Suite 1702
Oklahoma City, OK 73102-6406
Phone: (405) 426-8310
Toll Free: (800) 766-2223
Fax: (405) 900-7556
E-Mail: newbornscreen@health.ok.gov
Disclaimer: If you need information in a language other than English, please call 405-426-8310 where an interpreter can be used. Spanish brochures are available upon request.