Announcements About Newborn Screening

Questions/Answers for the Request for Proposal: Increasing Access to Newborn Hearing and Pulse Oximetry Screening in Out-of-Hospital Births

October, 2024

• Question: What is the difference between RFP Title and the MDH Grant Program Name?
  Answer: 
  • RFP Title: Increasing Access to Newborn Hearing and Pulse Oximetry Screening in Out-of-Hospital Births
  • MDH Grant Program Name: Minnesota Newborn Screening Program

Metachromatic leukodystrophy not recommended for addition to Minnesota's newborn screening panel

October, 2024

On October 8th, Minnesota's Advisory Committee on Heritable and Congenital Disorders recommended not to add metachromatic leukodystrophy (MLD) to Minnesota’s newborn screening panel.

MLD is a genetic condition that affects the brain and nervous system. Those with MLD experience a decline in motor and intellectual functions that become worse over time. Symptoms vary, but can include difficulty talking, seizures, difficulty walking, personality changes, and behavior and personality changes. There are multiple forms of the condition, and the most severe form leads to death in early childhood.

A formal letter will be sent to the nominators, informing them of the committee’s decision and including key points from the discussion and evidence review.

The committee also passed a motion to reconvene the evidence review committee for MLD and have a summary of new evidence presented at the April 2025 Advisory Committee on Heritable and Congenital Disorders meeting.

Although the nomination for MLD isn’t moving forward at this time, we will be watching for more information and work with the evidence review committee to review any new information regarding universal newborn screening for MLD. It is also under a full evidence review at the federal level and a vote is expected by the Advisory Committee on Heritable Diseases in Newborns and Children (ACHDNC) at their May 2025 meeting.

We appreciate the information and stories shared by parents, providers, and advocates with the committee. The science continues to develop on this condition and questions or unknown information that exist today may one day be available so Minnesota is better equipped to move forward with screening for MLD. 

Increasing Access to Newborn Hearing and Pulse Oximetry on Out-of-Hospital Births

September, 2024

The purpose of this funding is for midwives practicing in the state of Minnesota to purchase portable hearing and/or pulse oximetry screening equipment that may be used in the home or out-of-hospital birth sites. The goal is to increase access to hearing screening before 1 month of age and pulse oximetry screening at 24 hours of age. See the Grant Request for Proposal (PDF) for information on submitting a grant application.

The application’s due date is no later than Friday, November 29, 2024 at 4:30 p.m. Central Time.

Any questions about the application can be submitted to health.newbornscreening@state.mn.us no later than Monday, November 25, 2024 at 4:30 p.m. Central Time. Answers will be posted on the Newborn Screening Announcements page.

NSAC Fall Meeting Announcement

September, 2024

Please join the Newborn Screening Advisory Committee (NSAC) for the convening of the fall meeting. This meeting will be held in-person and streamed online. The agenda for the meeting: NSAC Fall Meeting Agenda (PDF).

You can register at: NSAC Fall Meeting Registration. 

Location: Wilder Foundation, 451 Lexington Pkwy N, St Paul, MN 55104 | Auditoriums A & B & Streamed online
Date: October 8th, 2024
Time: 1:00 pm – 4:00 pm

If you have any questions about the registration process, please email health.nsac@state.mn.us. 
 

NSAC Spring Meeting Announcement

March, 2024

The fall meeting for the Advisory Committee on Heritable and Congenital Disorders (also known as the Newborn Screening Advisory Committee) will be held Tuesday, April 23th, 2024, from 1:00-4:00 p.m. CDT at the Minnesota Humanities Center. The agenda for this meeting can be found at NSAC April 23 Meeting Agenda (PDF). If you are interested in providing a written or oral public comment, please email health.nsac@state.mn.us by April 12th. This meeting will be streamed to the public via Teams Live. You can join via this link: NSAC Meeting Link via Microsoft Teams Live. If you plan on attending the meeting in person, please RSVP at Registration for April Newborn Screening Advisory Committee Meeting.

Date/time: April 23th, 2024 | 1:00-4:00 p.m. CDT
Streaming: MS Teams live
Location:    Minnesota Humanities Center
                       The Commons
                       987 Ivy Ave E
                       St. Paul, MN 55106

Krabbe Disease Screening Has Started

February, 2024

Minnesota’s Newborn Screening Program began universal screening for Krabbe disease on February 26, 2024. All babies born in Minnesota will now be screened for the disease unless their parents opt out of newborn screening.

Krabbe disease is a rare, genetic condition in which the newborn cannot fully break down certain fats. These fats build up in the body and can lead to damage to the nerves affecting a person’s ability to eat, walk, and speak. In the most severe form, infantile Krabbe disease, symptoms can progress to death within the first two years of life.  

There is no cure for Krabbe disease, but treatment can help manage symptoms and improve quality of life. Currently, the only treatment for infantile Krabbe disease is a stem cell transplant, which is ideally performed before a baby is 30 days old. Due to the importance of early treatment, the process from screening to diagnostic exams and treatment must move quickly.

Identifying infantile Krabbe disease in newborns allows families to receive early diagnosis and monitoring, education, and appropriate medical care.  

The formal news release with additional information can be found on the MDH 2024 News Release page. 

Duchenne Muscular Dystrophy Added to Minnesota Newborn Screening Panel

January, 2024

​The Minnesota Department of Health (MDH) will add Duchenne muscular dystrophy (DMD) to the list of conditions for which Minnesota newborns are routinely screened. Minnesota Commissioner of Health Dr. Brooke Cunningham approved the addition of DMD to the Newborn Screening Program following a recommendation by the state's advisory committee.  

DMD is the most common form of muscular dystrophy, a genetic condition which gradually makes the body’s muscles weaker. Muscle weakness is first noticed in legs and arms, eventually leading to loss of mobility and weakness of internal muscles needed for breathing. It is extremely rare for females to have DMD, but they can be carriers. The life expectancy for males with this condition is around 20 years of age.  

​Screening for DMD among newborns allows families and medical specialists to tailor care, such as physical therapy, based on approved treatments available for children at certain ages. Disease-modifying treatments during the newborn period are available for 30% of affected newborns. Treatments are not curative, but symptoms and muscle breakdown are less severe.  

Based on the birth rate in Minnesota, it is estimated that nine newborns will be detected each year and receive early treatment and intervention.  

Commissioner Cunningham signed the order on Jan. 19 directing the department’s Newborn Screening Program to begin the steps needed to implement DMD 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 advisory committee and workgroup members for your time and expertise during the review process. Thank you to providers, parents, and advocates for bringing these conditions 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 at MDH 2024 News Releases. 

Advisory Committee Recommends Addition of Duchenne Muscular Dystrophy to Newborn Screening Panel

October, 2023

Minnesota's Advisory Committee on Heritable and Congenital Disorders has recommended the addition of Duchenne muscular dystrophy (DMD) to Minnesota's newborn screening panel. DMD is the most common form of muscular dystrophy, a genetic disorder which gradually makes the body’s muscles weaker.

This recommendation and the reason(s) for the decision will be provided to the Commissioner of Health for her final determination.

Thank you to all the parents, providers, and advocates who shared their stories with the committee during the condition review process, we value your input and experiences. Thank you to our specialists and advisory committee members for their time, dedication, and thoughtful consideration during the review process and vote.

Additional information will be shared on the Newborn Screening website as it becomes available.

NSAC Fall Meeting Announcement

The fall meeting for the Advisory Committee on Heritable and Congenital Disorders (also known as the Newborn Screening Advisory Committee) will be held Tuesday, October 24th, 2023, from 1:00-4:00 p.m. CDT at the Minnesota Humanities Center. The agenda for this meeting can be found here NSAC Oct 24th Meeting Agenda (PDF). If you are interested in providing a written or oral public comment, please email health.nsac@state.mn.us by October 13th. This meeting will be streamed to the public via Teams Live. You can join via this link: NSAC Meeting Link via Microsoft Teams Live.

Date/time: October 24, 2023 | 1:00-4:00 p.m. CDT
Streaming: MS Teams live
Location:    Minnesota Humanities Center
                        The Commons
                        987 Ivy Ave E
                        St. Paul, MN 55106

Three additional conditions approved for Newborn Screening in Minnesota

August, 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.

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.

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.

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