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

Newborn Screening Program Information:
Announcements


Advisory Committee Meeting

The Minnesota Advisory Committee on Heritable and Congenital Disorders will hold their next committee meeting on October 10th, 2017 from 1-4 pm 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. If you require special accommodations please contact Maggie Dreon or Sondra Rosendahl at 651-201-3548.

Oct 10, 2017 Meeting Agenda (PDF)

Newborn Screening will Start Screening for Mucopolysaccharidosis Type I and Pompe Disease

July 25, 2017

The Minnesota Newborn Screening Program is pleased to announce that we will begin screening for mucopolysaccharidosis type I and Pompe disease on August 1, 2017.

Based on preliminary data from two states already screening for this disorder, Missouri and New York, we expect around six Minnesota children to benefit from this screening each year. We look forward to helping even more Minnesota children start life healthy!


Summer Heat Can Impact Newborn Screening Specimens Causing Inaccurate Results

July 11, 2017

Laboratories, nurseries, and out-of-hospital providers may need to make changes to prevent exposure of newborn screening specimens to heat and humidity.

Some of the newborn screening tests involve direct measurement of enzyme levels on dried blood spots. These enzymes can denature in response to heat and humidity exposure any time after collection, making borderline and positive results more likely. MDH cannot distinguish between true abnormal results and false positives caused by heat exposure. This could cause unnecessary stress, extra time, and costs for both the submitters and the families.

During the summer additional precautions may be helpful to avoid exposure to heat and humidity, including:

  • Dry the newborn screening card in an area with good ventilation, but not under a hood
  • Do not dry specimens near a sink
  • Do not dry specimens in biohazard bags or any other plastic bags
  • Do not dry specimens inside a cupboard or a drawer
  • Alert your courier service of the need to avoid prolonged exposure to heat
For more information, please review guidance on handling specimens available at:

Newborn Screening Information for Providers: Blood Spot Collection

For questions or to request staff training, please call 651-201-5466 or 1-800-664-7772.


RFP Questions and Answers for July 3, 2017

RFP Questions and Answers for July 3, 2017 (PDF)

RFP Questions and Answers for June 26, 2017

Question: Based on the item #5 below under the section “Proposal Content”, our laboratory will not qualify for this RFP since we have not had the molecular assays for MPS-1 or Pompe for a year.

5. Responders must prove that they have a minimum of one year of experience with either molecular or biochemical testing.

Please let me know if my understanding is incorrect.

Answer: Your laboratory should qualify as we are asking for one year of experience performing any molecular or biochemical testing.

Question: Regarding Sample Tasks

2. MDH will ship specimens via overnight courier to the Contractor’s laboratory. Once samples arrive at the Contractor’s laboratory; the Contractor will perform accessioning, analysis, and reporting of test results within one week of receipt.

Question: If you ship, is this overnight courier paid by MDH or contract laboratory?

Answer: The courier is paid by MDH.


Notice of Contract Opportunity

Project Name: Second Tier Testing for Specified Newborn Screening Disorders

Details: The Minnesota Department of Health requests proposals for a contract laboratory to provide second tier testing for two of the lysosomal storage disorders recently added to the Minnesota newborn screening panel by the Commissioner of Health, with the option to add other lysosomal storage disorders as they are added to the panel in the future. The newly-added disorders include Mucopolysaccharidosis Type 1 (MPS 1) and Pompe Disease. If indicated by the results of first-tier analysis, the chosen contract laboratory will perform molecular or biochemical testing on dried blood spots using blood from the newborn screening card.

Work is anticipated to start after July 15, 2017.

Copy Request: To get a copy of the Request for Proposals, please send a written request, by email, to:

Jill Simonetti
NBS Operations Supervisor
Jill.Simonetti@state.mn.us

Proposal Deadline: All proposals must be received by the Minnesota Department of Health no later than 3:00 p.m., Central Time, July 5, 2017, and must be submitted through one of the two following ways:

  • Mailed to the following address:

    Minnesota Department of Health
    Jill Simonetti, Newborn Screening Operations Supervisor
    MDH Public Health Laboratory 1st Floor
    601 Robert Street North
    Saint Paul, MN 55155; or

  • Hand delivered to:

    Minnesota Department of Health Laboratory
    Jill Simonetti, Newborn Screening
    601 Robert Street North, Loading Dock
    Saint Paul, MN 55155

Mailed or hand-delivered proposals must include an electronic version on a USB drive. Hard copies submitted without an electronic version on a USB drive will not be accepted.

This request does not obligate the State to complete the work contemplated in this notice. The State reserves the right to cancel this solicitation. All expenses incurred in responding to this notice are solely the responsibility of the responder.


Rollout of New Colors in Materials

The State of Minnesota is moving forward with a new, unified state brand across all state agencies. The Newborn Screening Program will begin to update its materials with the new color scheme and logo. Materials will begin to look different over the next few months until all materials have the State’s unified brand look.


Screening for x-linked adrenoleukodystrophy on February 6, 2017

The Minnesota Newborn Screening Program is pleased to announce that we began screening for x-linked adrenoleukodystrophy (X-ALD) on February 9, 2017, and all samples that have arrived since February 6, 2017 will be tested.

Based on preliminary data from two states already screening for this disorder, Missouri and New York, we expect around 5-15 Minnesota children to benefit from this screening each year. We look forward to helping even more Minnesota children start life healthy!

Find X-ALD fact sheets here.


Change in Directive to Destroy process and form

Beginning in January, we have a new Directive to Destroy process and form. We are simplifying the process. Previously, the form separated the option to destroy the blood spots from the option to destroy the test results. The form now combines these options into one that will direct destruction of both blood spots and test results. Please remove or delete all copies of the old form and replace it with the new form beginning with the new year. This form is now available on our website on the Education Materials and Forms page under Legal Forms for Parents.


Upcoming appointments to the Newborn Hearing Screening Advisory Committee

On December 30, 2016, the Commissioner of Health will appoint or reappoint the following people to the Newborn Hearing Screening Advisory Committee for membership terms that run through January 6, 2020.

Appointee Position
Joan Boddicker A consumer from an organization representing cued speech communication options
Abby Meyer An otolaryngologist
Anna Paulson A representative of the Minnesota Commission Serving Deaf and Hard of Hearing People
David Rosenthal A representative from the Department of Human Services Deaf and Hard of Hearing Services Division
Sonny Wasilowski A representative of a consumer organization representing culturally Deaf persons
Mary Cashman-Bakken A representative or designee from the Department of Education Resource Center for the Deaf and Hard of Hearing
Candace Lindow-Davies A parent with a child with hearing loss representing a parent organization
Peggy Nelson An audiologist with experience in evaluation and intervention of infants and young children
Emilee Scheid A primary care provider with experience in the care of infants and young children
Lisa Schimmenti A pediatric geneticist
Kara Tempel A Part C coordinator or designee from the Department of Education, the Department of Health, or the Department of Human Services


Current members appointed through January 7, 2019

Listed below are current committee members whose terms run through January 7, 2019.

Member Position
Kathleen Anderson Department of Education Part C coordinator
Nicole Brown A Department of Health Early Hearing Detection and Intervention coordinator
Teresa Buck A representative from the Early Hearing Detection and Intervention teams
Kirsten Coverstone A Department of Health Early Hearing Detection and Intervention coordinator
Tina Huang An otolaryngologist
Joscelyn Martin An audiologist with experience in evaluation and intervention of infants and young children
Linda Murrans An audiologist with experience in evaluation and intervention of infants and young children
Gloria Nathanson A representative from a consumer organization representing culturally Deaf persons
Sara Oberg A speech-language pathologist with experience in evaluation and intervention of infants and young children
Michael Severson A primary care provider with experience in the care of infants and young children
Jay Wyant A consumer from an organization representing oral communication options


Early Hearing Detection and Intervention 2015 Annual Report

EHDI Annual Report 2015

The Minnesota Department of Health Early Hearing Detection and Intervention (EHDI) Program has released its 2015 Annual Report. Check out program updates and quality improvement initiatives, including:

  • Improved reporting of screening results with hospitals (pg. 5)
  • Collaboration with audiology to achieve EHDI goals (pg. 9)
  • An initiative with Ear, Nose, and Throat physicians to improve knowledge of 1-3-6 guidelines (pg. 10)
  • Identifying the mentoring needs of families with children who are D/HH (pg.15)

EHDI Annual Report 2015 (PDF)


ATTENTION: Newborn Screening Reports Update (8/15/2016)

As of August 15, 2016, the newborn screening report format has changed. If you have questions regarding these changes, please call 651-201-3548.


Newborn Screening Specimens No Longer Need to Be Collected Before Transport

The Newborn Screening Program no longer asks hospitals to collect screening specimens from most sick and premature infants who are transferred to NICU's.

  • For infants transported before 24 hours of age, the newborn screen should be collected by the NICU, not the birth hospital.
  • For infants transported after 24 hours of age, the newborn screen should be collected by the birth hospital.
  • If a transfusion is required, the screen should be collected before transfusion by the institution transfusing the baby.
  • If there is a strong likelihood that the infant will expire during transport, a screen should be collected before transfer.

This approach will be more cost effective, eliminate extra sticks for the baby, and allow staff at the birth hospital more time to devote to care of the baby and family before transport. Please contact Newborn Screening Program staff with any questions about screening of infants requiring transfer.


Celebrating Laboratory Professionals Week!
April 24-30, 2016

Emily, Environmental Analyst from the Minnesota Newborn Screening Prorgam

Emily's Story

I came to work for the Minnesota Department of Health Newborn Screening Program early in 2012, drawn to the position because of its positive impact on the Minnesota community. I thought I knew about the Minnesota Newborn Screening program but to be on the inside and truly understand the scope and reach of the program was certainly an eye-opening experience. It's one thing to imagine testing 72,000 cards for over 50 conditions, but quite another thing to experience it firsthand!

One of the most impressive things to me about working for newborn screening at the Minnesota Department of Health is that the program continues to improve each and every day. The sense of teamwork and ambition can be clearly felt in all aspects of the job, from the laboratory to the follow-up counselors and from everyone in between. The addition of new tests, new equipment and new disorders to be screened for make this job fun and challenging. At the end of the day, it's very satisfying to realize that every blood spot tested either set off a chain reaction to get help for a baby in need or brought peace of mind to a family that they have a healthy baby.

-Emily, Environmental Analyst, Minnesota Newborn Screening Program


Upcoming appointments to the Advisory Committee on Heritable and Congenital Disorders

On February 12, 2016, Commissioner Ehlinger will appoint or reappoint the following people to the Advisory Committee on Heritable and Congenital Disorders (also referred to as the Newborn Screening Advisory Committee). Membership terms run from January 4, 2016 through January 6, 2020.

Appointee Position
Roshini Abraham Newborn screening laboratory professional
Susan Berry Clinician and researcher specializing in newborn diseases and disorders
Kristi Borowski Clinician and researcher specializing in newborn diseases and disorders
Sheyhan Gelle Parent
Courtney Jarboe Other expert as needed representing related fields such as emerging technologies and health insurance
Ed Jenkins Parent
Theresa Laguna Clinician and researcher specializing in newborn diseases and disorders
Dietrich Matern Newborn screening laboratory professional
Emilee Scheid Other expert as needed representing related fields such as emerging technologies and health insurance
Kevin Sheridan Clinician and researcher specializing in newborn diseases and disorders
Kathy Stagni Parent
Renee Temme Genetic counselor
Julie Thompson Larson Birth hospital representative


Current members appointed through January 7, 2019

Listed below are current committee members whose terms run through January 7, 2019.

Member Position
Mark Bergeron Clinician and researcher specializing in newborn diseases and disorders
Vikas Bhambhani Clinician and researcher specializing in newborn diseases and disorders
Jenny Bock Nutritionist
Kirsten Dummer Clinician and researcher specializing in newborn diseases and disorders
Robert Jacobson Primary care provider
Steven Johnson Parent
Amy Karger Newborn screening laboratory professional
Jan Larson Parent
Kristin Loncorich Birth hospital representative
Stephen Nelson Clinician and researcher specializing in newborn diseases and disorders
Michael Nwaneri Primary care provider
Martha Overby Other expert as needed representing related fields such as emerging technologies and health insurance
Annamarie Saarinen Other expert as needed representing related fields such as emerging technologies and health insurance
Kiki Sarafoglou Clinician and researcher specializing in newborn diseases and disorders
Jennifer Ward Clinician and researcher specializing in newborn diseases and disorders


Early Hearing Detection & Intervention 2014 Annual Report

EHDI Annual Report 2014

The Minnesota Department of Health Early Hearing Detection and Intervention (EHDI) Program has released its 2014 Annual Report. Check out program updates and quality improvement initiatives, including:

  • The implementation of MNScreen for electronic reporting of results (pg. 5)
  • Quality assurance reports and open discussions with audiologists (pg. 9)
  • Collaboration with local public health nurses to reduce loss to follow-up (pg. 11)
  • Participation in a national survey to assess Minnesota physicians' current knowledge, attitudes, and practices regarding hearing screening, diagnosis, and intervention (pg. 6, 9, 15)

EHDI Annual Report 2014 (PDF)


Upcoming appointments to the Newborn Hearing Screening Advisory Committee

On August 7, 2015, the Commissioner of Health will appoint or reappoint the following people to the Newborn Hearing Screening Advisory Committee for membership terms that run through January 7, 2019.

Appointee Position
Kathleen Anderson Department of Education Part C coordinator
Nicole Brown Department of Health early hearing detection and intervention coordinator
Teresa Buck Representative from the early hearing detection and intervention teams
Dennis Ceminski Department of Education regional low-incidence facilitator representative
Kirsten Coverstone Department of Health early hearing detection and intervention coordinator
Tina Huang Otolaryngologist
Joscelyn Martin Audiologist with experience in evaluation and intervention of infants and young children
Linda Murrans Audiologist with experience in evaluation and intervention of infants and young children
Gloria Nathanson Representative from a consumer organization representing culturally deaf persons
Sara Oberg Speech-language pathologist with experience in evaluation and intervention of infants and young children
Michael Severson Primary care provider with experience in the care of infants and young children
Jay Wyant Consumer from an organization representing oral communication options

Current members appointed through January 4, 2016

Listed below are current committee members whose terms run through January 4, 2016.

Member Position
Mary Cashman-Bakken Representative or designee from the Department of Education resource center for the deaf and hard of hearing
John Gournaris Representative from the Department of Human Services Deaf and Hard of Hearing Services Division
Kara Hall Department of Education Part C coordinator
Candace Lindow-Davies Parent with a child with hearing loss representing a parent organization
Karleen Maeurer Urban birth hospital representative
Peggy Nelson Audiologist with experience in evaluation and intervention of infants and young children
Emilee Scheid Primary care provider with experience in the care of infants and young children
Lisa Schimmenti Pediatric geneticist
Geoffrey Service Otolaryngologist
Emily Smith-Lundberg Representative of a consumer organization representing culturally deaf persons


Sickle Cell Trait BrochureChange in sickle cell trait notification process for parents and providers

Beginning June 19, 2015, we will communicate sickle cell trait (SCT) status to both providers and families of newborns identified with SCT on the newborn screen. This change is part of an effort to standardize regional differences in communicating SCT results.

Providers can expect the following communications for any newborn who has a screen collected on or after June 19th and who is identified with SCT:

A mailing to the baby's parents that includes:

  • A letter explaining the result and next steps
  • A parent/patient handout explaining SCT
  • A list of additional resources

A fax to the baby's provider that includes:

  • The patient's newborn screen results
  • A provider fact sheet on SCT
  • A parent/patient handout explaining SCT
  • A list of additional resources

A letter was sent to Minnesota pediatric and family practice clinic managers and out-of-hospital birth midwives prior to June 19 explaining these changes. Please contact Jessica Tarnowski at 651-201-5515 or mom.tatahmentan@state.mn.us with questions or concerns.


InfographicNEW! Newborn Screening Infographic for Parents

We have a new Newborn Screening Infographic available to order! The infographic is designed to help providers educate parents about newborn screening and their options after screening.

Every new parent should receive a copy of the Newborn Screening Infographic AND Newborn Screening Fact Sheet prior to screening. Providing this information to parents and answering any questions prior to screening is required by Minnesota law.

Birth facilities will begin receiving Newborn Screening Infographics with every screening card and fact sheet shipment. In the meantime, order free copies for your nursery or clinic today! Visit our Education Materials and Forms page to place your order.


Celebrating Laboratory Professionals Week!
April 19-25, 2015

Photo of BertaBerta's Story

I came to work for the Minnesota Department of Health at the end of 2009 from the University of Minnesota. The Newborn Screening Program was a new and unknown environment for me because I had always worked in research institutions. But it was an exciting time for newborn screening in Minnesota: an immune disorder known as severe combined immunodeficiency (SCID) was going to be added to the list of disorders all newborns are screened for, meaning that even more newborns with serious illnesses would have a chance at treatment and a healthy life.

I started working on screening for SCID as soon as I joined the laboratory and traveled to several states to be trained by scientists in those programs who pioneered SCID testing. I realized that this project was going to be different from what I was used to. It involved not only the development of methodology, a task that I was very familiar with, but also all of the rigorous steps that must be taken to ensure the timely and accurate reporting of results.

Screening for SCID was implemented at the beginning of 2013. So far 16 children have been diagnosed with an immune deficiency with the help of newborn screening and are now receiving proper care, increasing their chances of living a healthy life. Although it's sad to know that a baby is sick when we find a positive result, it is rewarding when the tests we run are able to detect that disorder, so that the baby can get a diagnosis and treatment before it is too late.

I am very proud to be part of the newborn screening team—a great group of people who really care for the health and well-being of Minnesota babies.

-Berta, Research Scientist, Minnesota Newborn Screening Program


Upcoming appointments to the Advisory Committee on Heritable and Congenital Disorders

On April 3, 2015, the Commissioner of Health will appoint or reappoint the following people to the Advisory Committee on Heritable and Congenital Disorders (Newborn Screening Advisory Committee). Membership terms run from January 5, 2015 through January 7, 2019.

Appointee Position
Mark Bergeron Clinician and researcher specializing in newborn diseases and disorders
Vikas Bhambhani Clinician and researcher specializing in newborn diseases and disorders
Jenny Bock Nutritionist
Kirsten Dummer Clinician and researcher specializing in newborn diseases and disorders
Robert Jacobson Primary care provider
Steven Johnson Parent
Amy Karger Newborn screening laboratory professional
Jan Larson Parent
Kristin Loncorich Birth hospital representative
Stephen Nelson Clinician and researcher specializing in newborn diseases and disorders
Michael Nwaneri Primary care provider
Martha Overby Other expert as needed representing related fields such as emerging technologies and health insurance
Annamarie Saarinen Other expert as needed representing related fields such as emerging technologies and health insurance
Kyriakie Sarafoglou Clinician and researcher specializing in newborn diseases and disorders
Jennifer Ward Clinician and researcher specializing in newborn diseases and disorders


MNScreen logoPulse oximetry screening implementation update

Our program staff is in the process of implementing a reporting method for pulse oximetry screening results for critical congenital heart disease (CCHD). A law passed by the legislature requires that CCHD screening be provided to all newborns before leaving the hospital. Early detection of CCHD can save lives.

To facilitate results reporting for hospital nurseries, we are in the process of implementing an electronic system to report both pulse oximetry and hearing screening results to MDH. The electronic system, MNScreen, is already in use in some Minnesota hospitals with a goal to implement the system statewide this year.

If your nursery has not yet learned about MNScreen or begun plans for implementation, please contact Amy Gaviglio at amy.gaviglio@state.mn.us.

Learn more on our MNScreen page!


Pregnant mom and childGet the facts about newborn screening!

Here are a few things every parent should know:

  • Newborn screening includes blood spot, hearing, and pulse oximetry screening. Learn more about each of the three screens on our Screening Basics page.
  • Newborn screening saves lives and helps prevent health problems. Read how newborn screening has impacted real Minnesota families on our Family Stories page.
  • After blood spot screening is complete, any leftover blood is stored by the Minnesota Department of Health according to state law. Learn more on our Blood Spots and Test Results: Retention Practices page.
  • Stored blood spots are NOT used for any research unrelated to newborn screening or shared with any external or other government agencies without written consent from parents or legal guardians. Learn more on our FAQ page.
  • Parents have options regarding newborn screening. Talk with your healthcare provider if you have questions about your options, or learn more on our Parental Options page.