Newborn Screening Program Information: Announcements - Minnesota Dept. of Health

Newborn Screening Information:
Announcements


Disorder coming soon

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.

Information about 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: News release: 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 you 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 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.

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

Join Microsoft Teams Meeting

Join with a video conferencing device
mn@m.webex.com
Video Conference ID: 117 577 918 7
Alternate VTC instructions

Or call in (audio only)
+1 651-395-7448,172590254#
United States, St. Paul
Phone Conference ID: 172 590 254#

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 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 (https://www.health.state.mn.us/news/pressrel/index.html)

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.

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

Join with a video conferencing device
mn@m.webex.com
Video Conference ID: 115 442 952 2
Alternate VTC instructions

Or call in (audio only)
+1 651-395-7448,776953435#
United States, St. Paul
Phone Conference ID: 776 953 435#

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:
Join Microsoft Teams Meeting

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 healthcare 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.

Newborn Screening Advisory Committee Meeting October 2020

Oct 2020

The Minnesota Advisory Committee on Heritable and Congenital Disorders will hold their next committee meeting on Tuesday, October 6, 2020 from 1-3PM. This meeting is open to the public.

Due to the current COVID-19 pandemic, this will be a virtual meeting 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.
Join Microsoft Teams Meeting
Conference ID: 223 662 275#

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

Newborn Hearing Screening Advisory Committee Meeting August 2020

Aug 2020

The Newborn Hearing Screening Advisory Committee will hold their next committee meeting virtually on August 19, 2020. This meeting is open to the public and a link to the meeting will be shared soon. Please visit our advisory committee’s webpage for more information and to review the meeting agenda:

WebEx Link: https://minnesota.webex.com/minnesota/j.php?MTID=m13b6e432da5a3fb6d557a88895e5a2dc

Meeting number: 146 679 6278
Meeting password: KRmYPdmX273

Audio connection:
+1-415-655-0003 United States Toll
1-855-282-6330 United States Toll Free
Global call-in numbers
Access code: 146 679 6278

CART and ASL Interpreting services will be available to participants. Members who would like to use CART and/or ASL interpreters will need to open both the WebEx meeting and access to CART and/or ASL Interpreters in a separate tab. 

Access to accommodations can be found here:

Newborn Screening program Information: NHSAC Committee

How do I get my sickle cell trait results to meet NCAA requirements?

Minnesota has been screening for sickle cell disease since 1988. The testing also detects healthy babies with sickle cell trait and other hemoglobin traits. Unfortunately, MDH was required to destroy the blood spots and test results for all individuals with blood spots collected before August 1, 2014. The only exceptions are if a parent provided written consent for long-term storage and use of her or his child’s blood spots and test results. 

We understand that the NCAA requires student athletes to provide their sickle cell trait status before participation in intercollegiate athletics.

The following options are available to collegiate athletes:

  • Contact medical records at the hospital where you were born to request a copy of your newborn screening results. It is possible they no longer have the test results.
  • Check with the clinic where you received medical care as a baby to see if they have a copy of the results. It is possible they do not have the test results.
  • Make an appointment to get a blood test (hemoglobin electrophoresis) through your primary care provider or student health service.
  • Discuss waiver options with your college athletics department.

We hope you find this information helpful and wish you great success in college! If you have additional questions about sickle cell trait testing, you can speak with one of our genetic counselors at 651-201-3548 or email us at health.newbornscreening@state.mn.us.

Newborn Screening Continues During COVID-19 Outbreak

March 2020

Minnesota Department of Health guidance on March 25, 2020 through a Health Alert Network Advisory Notice, affirmed that newborn screening and all follow-up (for bloodspot, hearing screening, and critical congenital heart screening) should continue during the COVID-19 outbreak. The American Academy of Pediatrics has also issued an official statement supporting the importance of continuing newborn screening and follow-up according to existing best practice goals and standards.

Guidance on Newborn Screening during COVID-19

Though scheduling availability and location may be altered in some communities to allow for social distancing, most clinics are still prioritizing and scheduling newborns who need follow-up testing. Please contact MDH-Newborn Screening at 1-800-664-7772 or health.newbornscreening@state.mn.us for additional resources if needed.

Advisory Committee on Heritable and Congenital Disorders - Vacancies

Jan 2020

The Minnesota Advisory Committee on Heritable and Congenital Disorders has upcoming vacancies for terms beginning January 2020 and ending January 2024. If you are interested in applying, please visit our webpage for more information:

How Do I Become an Advisor on the Newborn Screening Committee?

Newborn Hearing Screening Advisory Committee Meeting November 2019

Nov 2019

The Newborn Hearing Screening Advisory Committee will hold their next committee meeting on Wednesday, November 20, 2019 from 1 – 4p at the Wilder Center, auditoriums A and B. The Wilder Center is located at 451 Lexington Parkway North, St. Paul, MN 55104. This meeting is open to the public. Please visit our advisory committee’s webpage for more information:

Newborn Screening Program Information: NHSAC Committee