Announcements About Newborn Screening

Three additional conditions approved for Newborn Screening in Minnesota

Aug 2023

Minnesota Commissioner of Health Dr. Brooke Cunningham has approved the Newborn Screening Advisory Committee’s recommendation to add guanidinoacetate methyltransferase (GAMT) deficiency, Mucopolysaccharidosis Type II (MPS II), and Krabbe disease to the list of conditions for which Minnesota newborns are routinely screened.

Earlier this week, Commissioner Cunningham directed the Newborn Screening program to begin the steps needed to implement newborn screening for guanidinoacetate methyltransferase (GAMT) deficiency, Mucopolysaccharidosis Type II (MPS II), and Krabbe disease.

Thank you advisory committee and workgroup members for your time and expertise during the review process. Thank you to providers, parents, and advocates for bringing cCMV forward to the advisory committee; future generations of Minnesota’s children and families will be healthier thanks to your work.

The formal news release with additional information is available through the MDH 2023 News Releases page or via this direct link Three Additional Conditions Approved for Newborn Screening in Minnesota.

Possible UPS strike on August 1 and Newborn Screening specimens

July, 2023

With the possibility of a UPS strike beginning on August 1, 2023, we wanted to inform you that we are working with UPS to ensure that we continue to receive newborn screening specimens from our submitters in a timely manner. UPS has assured us they have a plan in place and service will continue as usual, though it may be a little slower.

For those of you that use UPS to send us your specimens, there are some things you can do:

• You can order UPS Medical Envelopes (item number 010196122), which may facilitate more timely transport to the MDH Public Health Laboratory.
• Be diligent about keeping track of which baby’s specimen card go with each UPS tracking number.
• Request email notifications of when the envelope is picked up from your location and again when they are delivered to the MDH Public Health Laboratory.
  • This can be found in section 4 when setting up your shipping label.
• If you are shipping specimens on a Friday, please be sure that the “Deliver on Saturday” box is checked.
• Your timeliness when collecting specimens will be very important, please remember to collect specimens between 24-48 hours after birth. There are some exceptions; you can call our program genetic counselors at 651-201-3548 with any collection questions.
• Multiple newborn screening specimens may be sent together; however, a shipment should never be delayed or “batched” to wait for additional specimens.
• Additionally, newborn screening specimens should never be placed in the same container as other specimen types traveling to the Public Health Laboratory.

In the event of a UPS strike, please make sure this message is shared with all who submit newborn screening specimens. UPS and the Teamsters Union have until July 31, 2023 to come to an agreement and avert a strike.

If you or your staff have questions or concerns about specimen shipping, you can email us at Health.NewbornScreening@state.mn.us or call our general line at 651-201-5466 or toll-free at 800-664-7772.

Newborn Screening Advisory Committee meeting June 6th, 2023

May, 2023

The Minnesota Advisory Committee on Heritable and Congenital Disorders will hold their next committee meeting on Tuesday, June 6, 2023 from 1-3 pm CDT.

The committee will be reviewing three nominated conditions and discuss their readiness for screening here in Minnesota. Please see Newborn Screening Advisory Committee Meeting Agenda (PDF) for the full agenda.

The meeting will be virtual using Microsoft Teams. You do not need any special software to join this meeting, but using a Chrome or Edge browser is recommended for best experience.

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Please visit our webpage for more information about this committee Newborn Screening Program Information: NSAC Committee.

Updated Parental Refusal or Delay of Newborn Screening

April, 2023

The Newborn Screening Program has updated the Parental Refusal or Delay of Newborn Screening form (PDF).  Key changes include:

• A designated spot to adhere a patient label.
• An option to document parental choice to delay screening.   
  • Form includes space to indicate where (or by whom) the screen will be completed.
  • All delayed screening should be completed within one week of age.
• Check box added in case parent(s) or guardian(s) refuse to sign the Parental Refusal or Delay of Newborn Screening.
• Witness information to be completed by hospital staff.
• Improved instructions on how to process/handle the signed Parental Refusal or Delay of Newborn Screening.
• The Parental Refusal or Delay of Newborn Screening form (PDF) is available as a fillable pdf on the Newborn Screening website.

MDH staff hope that these improvements will lead to better documentation of the situations when parents opt to decline or delay newborn screening. Please reach out to Amy Dahle at 651-201-5459 or Amy.Dahle@state.mn.us with any questions.

Now screening for congenital cytomegalovirus (cCMV)

February, 2023

The Minnesota Newborn Screening Program is pleased to announce that earlier this week we began screening for congenital cytomegalovirus. Congenital cytomegalovirus is the most common viral infection in newborns. It occurs when the infection is passed from a pregnant person to their unborn baby and can cause a range of problems, including hearing loss. Officials estimate that up to 300 babies out of 65,000 born each year in Minnesota will have cCMV.

Pilot studies suggest that most babies with cCMV have no symptoms of the disease at birth and are not expected to develop symptoms. However, about 20% of babies diagnosed with cCMV will have symptoms either at birth or later in childhood.

Symptoms at birth may include hearing loss, but a small portion of babies will also have other signs of disease such as a very small head, a smaller body than expected for age, skin rash, yellowing of skin and whites of eyes (jaundice), and/or enlarged liver and spleen. These children are also at risk for intellectual disabilities, hearing loss, vision loss and other health problems.

Of that 20%, about half will have permanent hearing loss as the only symptom of the disease. The hearing loss may be present at birth or show up later in childhood. For this reason, it is important that children with cCMV have regular hearing exams even if no other symptoms are present at birth.

Screening for cCMV helps identify infants at risk for hearing loss and who may benefit from follow-up monitoring and early access to interventions such as sign language, hearing aids and cochlear implants. Newborn screening cannot predict if a baby will have symptoms, which is why additional testing is important for children with cCMV. Follow-up urine testing within 21 days will determine whether the baby was infected with cytomegalovirus at birth. If cytomegalovirus is found in the baby’s urine, more testing will be recommended to look for symptoms of the disease.

Screening for cCMV uses a quantitative real-time polymerase chain reaction (qPCR) screening method to identify CMV DNA in dried blood spots. Research by the University of Minnesota and the Centers for Disease Control and Prevention showed it was feasible to use dried blood spots to screen for cCMV. Most studies or tests for cCMV have used saliva or urine.

For more information about CMV:

Newborn Screening and cCMV: Congenital Cytomegalovirus

CMV and cCMV: Cytomegalovirus (CMV) and Congenital CMV (cCMV)

Minnesota Department of Health cCMV Press Release 

Increasing access to newborn hearing screening in out-of-hospital births – funding opportunity

November, 2022

The purpose of this funding is for out-of-hospital birth providers to purchase portable hearing screening equipment and supplies that may be used in the home as well as at out-of-hospital birth sites to increase access to hearing screening before one month of age. The expected outcome of this program is to increase the rate of hearing screening that occurs before one month of age to infants who are not born in a hospital.

GRANT REQUEST FOR PROPOSAL: Increasing Access to Newborn Hearing Screening in Out-of-Hospital Births (PDF)

Newborn Screening Advisory Committee meeting October 4, 2022

October, 2022

The Minnesota Advisory Committee on Heritable and Congenital Disorders will hold their next committee meeting on Tuesday, October 4, 2022 from 1-3 PM.

The Advisory Committee will be hearing about implementation planning for Cytomegalovirus and updates on additional disorders of interest.

Due to the current COVID-19 pandemic, the meeting will be virtual using Microsoft Teams. You do not need any special software to join this meeting, but using a Chrome or Edge browser is recommended for best experience.

Click on “Join Microsoft Teams Meeting” below to participate.

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Please visit our webpage for more information about this committee and the meeting agenda:
Newborn Screening Program Information: NSAC Committee

Disorder newly added to panel

July 2022

Congenital cytomegalovirus (cCMV) has been approved for addition to Minnesota's newborn screening panel. Implementation is currently in progress and screening has not yet begun.

The Vivian Act and the addition of Congenital Cytomegalovirus (cCMV) to the Minnesota newborn screening panel

July 2022

In July of 2021 the State Legislature passed the Vivian Act which instructed the Minnesota Department of Health (MDH) to put forth an educational effort regarding congenital cytomegalovirus (cCMV). This legislation also required that the Advisory Committee on Heritable and Congenital Disorders review cCMV as a possible candidate condition for inclusion on the newborn screening panel. The committee finished that work and in early January made its recommendation that cCMV be added to the panel. The commissioner reviewed and signed this recommendation. You can read the news release here: Congenital cytomegalovirus approved for addition to newborn screening panel (www.health.state.mn.us/news/pressrel/2022/newborn020222.html).

The Vivian Act was written to include an automatic fee increase if cCMV screening was added to the panel. The fee increase is $43 per specimen and will go into effect on July 1, 2022. Testing of all newborn screening specimen cards received on or after this effective date will be billed at $235 each. Screening will not begin July 1, but preparations are underway. Additional communication will be sent out when we have the date that screening will start.

This new fee will allow MDH to hire staff, create and distribute educational materials, procure laboratory equipment and supplies, and further support the important role newborn screening plays in protecting the lives and health of children in Minnesota.

We look forward to continuing our collaboration with health care providers in the life-saving work of newborn screening. Please feel free to contact us at 651-201-5466 or health.newbornscreening@state.mn.us with any questions or comments you have regarding the Vivian Act or the fee increase.

Newborn Screening Advisory Committee meeting May 31, 2022

May 2022

The Minnesota Advisory Committee on Heritable and Congenital Disorders will hold their next committee meeting on Tuesday, May 31, 2022 from 1-3 PM.

The Advisory Committee will be hearing about two recently nominated conditions for addition consideration: Duchenne muscular dystrophy (DMD) and Krabbe disease. This meeting is open to the public, and there is time allotted for public comments.

Due to the current COVID-19 pandemic, the meeting will be virtual using Microsoft Teams. You do not need any special software to join this meeting, but using a Chrome or Edge browser is recommended for best experience.

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Please visit our webpage for more information about this committee and the meeting agenda:
Newborn Screening Program Information: NSAC Committee

Congenital Cytomegalovirus (cCMV) Approved for Newborn Screening

Minnesota Commissioner of Health Jan Malcolm has approved an advisory committee’s recommendation to add congenital cytomegalovirus (cCMV) to the list of conditions for which Minnesota newborns are routinely screened, paving the way for Minnesota to become the first state in the nation to screen every newborn for cCMV.

Commissioner Malcolm has directed the Newborn Screening program to begin the steps needed to implement cCMV screening. This includes validating a test method, developing result and follow-up protocols, and working with external partners to establish clinical guidelines. Please be patient as we work towards implementation, which may take some time. We will continue to communicate with you regarding our progress as we learn more.

Thank you to the advisory committee and workgroup members for your time and expertise during the review process. Thank you to providers, parents, and advocates for bringing cCMV forward to the advisory committee; future generations of Minnesota’s children and families will be healthier thanks to your work.

The formal news release with additional information can be found on the MDH 2022 News Release page.

MDH 2022 News Release page

Newborn Screening Advisory Committee meeting January 11, 2022

Jan 2022

The Minnesota Advisory Committee on Heritable and Congenital Disorders will hold their next committee meeting on Tuesday, January 11, 2022 from 1-3 PM.

The Advisory Committee will be actively discussing and voting on whether or not to recommend congenital cytomegalovirus to the Commissioner of Health for consideration of its addition to Minnesota’s newborn screening panel. This meeting is open to the public, but public comments will be limited. If you would like to provide public comment, please do so in writing to health.nsac@state.mn.us. Communications will be shared with committee members for their review in advance of the meeting.

Due to the current COVID-19 pandemic, the meeting will be virtual using Microsoft Teams. You do not need any special software to join this meeting, but using a Chrome or Edge browser is recommended for best experience.

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Please visit our webpage for more information about this committee:
Newborn Screening Program Information: NSAC Committee

Newborn Screening Advisory Committee meeting October 2021

The Minnesota Advisory Committee on Heritable and Congenital Disorders will hold their next committee meeting on Tuesday, October 26, 2021 from 1-3 PM. This meeting is open to the public.

If you would like to submit written comments related to agenda topics, please send to health.nsac@state.mn.us. Communications will be shared with committee members for their review.

Due to the current COVID-19 pandemic, the meeting will be virtual using Microsoft Teams. You do not need any special software to join this meeting, but using a Chrome or Edge browser is recommended for best experience.

Click on “Join Microsoft Teams Meeting” below to participate:
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Please visit the our webpage for more information about this committee:
Newborn Screening Program Information: NSAC Committee

Newborn screening legislation passed

June 2021

On June 29th, 2021, two pieces of legislation were signed into law involving newborn screening.

First, the newborn screening fee outlined in Minnesota Statute 144.125 has increased. Testing of all newborn screening specimen cards received on or after July 1, 2021 will be billed at $192 each. The last fee increase was eight years ago, and in that time, six conditions have been added to the Minnesota newborn screening panel. This new fee will help further support the important role newborn screening plays in protecting the lives and health of children in our state. For questions related to the fee increase, please contact Jill Simonetti at 651-201-5469 or Jill.Simonetti@state.mn.us.

Second, the Vivian Act was passed authorizing MDH to educate pregnant women and their health care providers about a condition called congenital cytomegalovirus (cCMV). This legislation also requires that the Advisory Committee on Heritable and Congenital Disorders review cCMV as a possible candidate condition for inclusion on the newborn screening panel. This Committee has a defined process for reviewing candidate conditions, which can be found at Candidate Condition Review Process.

For questions related to cCMV screening and the Advisory Committee process, please contact Sondra Rosendahl at 651-201-5922 or Sondra.Rosendahl@state.mn.us.