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

Newborn Screening Program Information:
Announcements


Visit us at the State Fair!

Come visit the Newborn Screening Program at the Minnesota State Fair! Each day we will be highlighting one of our many community organizations that is involved with newborn screening in Minnesota.

  • New this year, we have a MinneStories listening station where fairgoers can listen to inspiring stories from Minnesotans impacted by newborn screening.
  • Swing by for a FREE newborn screening fan to keep you cool during those hot days at the fair.
  • FREE onesies will be given to pregnant women or parents who have a child under the age of one in exchange for completing a short survey that can be found at our booth or the lactation station.

Find us at the HealthFair 11 building, located on the corner of Dan Patch Ave. and Cooper St.

Are you a provider or family whose life has been impacted by screening? Please introduce yourself to our volunteers at the booth so we can thank you and give you a one-of-a-kind I love newborn screening button.

See you at the fair!

Calendar of Community Organizations

  • Thursday, August 25: Cystic Fibrosis Foundation of Minnesota
  • Friday, August 26: Minnesota Perinatal Organization
  • Saturday, August 27: Lasting Imprint
  • Sunday, August 28: Organic Acidemia Association
  • Monday, August 29: AWHONN MN (Association of Women's Health, Obstetric and Neonatal Nurses)
  • Tuesday, August 30: Newborn Foundation
  • Wednesday, August 31: Minnesota Academy of Family Physicians
  • Thursday, September 1: PACER
  • Friday, September 2: MN Public Health Association
  • Saturday, September 3: MN Council of Certified Professional Midwives
  • Sunday, September 4: Sickle Cell Foundation of MN
  • Monday, September 5: MN Hands & Voices and Lifetrack

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


Newborn Screening Advisory Committee Meeting Coming up on April 26, 2016

The committee that advises the Minnesota Department of Health's (MDH) Newborn Screening Program will be meeting on April 26, 2016 from 1-4 PM at the Wilder Center in St. Paul, MN. The committee welcomes guest speaker, Dr. Mark Schleiss, to present on congenital cytomegalovirus in the context of newborn screening.

American Sign Language interpretation is available upon request. Please contact health.newbornscreening@state.mn.us or call 1-800-664-7772 to make this request.


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


Vacancies on the Advisory Committee on Heritable and Congenital Disorders

The Advisory Committee on Heritable and Congenital Disorders has the following vacancies:

  • One genetic counselor
  • Four clinicians and researchers specializing in newborn diseases and disorders
  • Two parents or other consumers
  • One newborn screening laboratory professional
  • One birth hospital representative

The Advisory Committee provides advice and recommendations to the Commissioner of Health concerning tests and treatments for heritable and congenital disorders found in newborn children. Members of this committee consist of parents, providers, and other experts with vested interest in newborn screening. Appointment terms are for four years. At the end of the four-year term, members are welcome to re-apply. This committee meets twice per year (spring and fall).

If interested, please visit the following website to apply for one of these open appointments:

Open Commissions and Appointments

When applying, it is necessary to apply to serve on the Advisory Committee on Heritable and Congenital Disorders, which is the formal name of the committee. We ask that applications be submitted by November 16th by close of business day to be considered for appointment beginning in January 2016.


Newborn Screening Advisory Committee Meeting Coming up on Oct. 13, 2015

The committee that advises the Minnesota Department of Health’s (MDH) Newborn Screening program will be meeting on Oct. 13, 2015 from 12-3 pm at the Wilder Center in St. Paul, MN. The meeting agenda will include review, discussion, and potential recommendation for screening in Minnesota of the following candidate conditions: X-linked Adrenoleukodystrophy (X-ALD) and six lysosomal diseases, including Fabry, Gaucher, Hurler, Krabbe, Niemann Pick A/B, and Pompe.

MDH is openly soliciting public comments and are encouraging families interested in sharing their story with the advisors to provide written testimony by Sept. 30, 2015. These testimonies can be emailed to health.newbornscreening@state.mn.us or contact the program at 1-800-664-7772 to obtain a mailing address. For planning purposes, please let the program know if you or your family/friends plan to attend this meeting in October. If you have any questions please email us at health.newbornscreening@state.mn.us or call the program at 800-664-7772.


Visit us at the Minnesota State Fair Aug. 27 - Sept. 7!

Newborn Screening fansThe Newborn Screening Program will make its debut appearance at the Minnesota State Fair this year! We are eager to help fairgoers learn about the life-saving screening program and have fun with a Made in Minnesota photo booth, complete with Minnesota-themed props like tater tot hot dish, a canoe paddle, and an oversized mosquito. And we want YOU to join us!

Our booth will feature stories of Minnesotans whose lives were changed by newborn screening, a Minnesota-themed photo booth Facebook contest, and FREE newborn screening fans to keep fairgoers cool during the Great Minnesota Get Together. Find us at the HealthFair 11 building, located on the corner of Dan Patch Ave. and Cooper St.

Are you a provider or family whose life has been impacted by screening? Please introduce yourself to our volunteers at the booth so we can thank you and give you a one-of-a-kind I ♥ newborn screening button.

See you at the fair!


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)


WEBINAR: Educating Parents about Newborn Screening and Parental Options

The following recorded webinar introduces our newest educational material for parents: the Newborn Screening Infographic. Amy Gaviglio discusses the purpose of the new handout, how it should be used, and best practice regarding parent education. We encourage all providers who perform screening to watch the webinar.

To order free copies of the infographic for your facility, please visit our Education Materials and Forms page.


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 jessica.tarnowski@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.

We will be offering free educational webinars for providers to learn more about this new tool and parental options after screening on June 18 and June 23. Please follow one of the links below to register:

Registration for Webinar: Thursday, June 18 — 7:30-8:30 a.m.
Registration for Webinar: Thursday, June 18 — 12:30-1:30 p.m.

Registration for Webinar: Tuesday, June 23 — 7:30-8:30 a.m.
Registration for Webinar: Tuesday, June 23 — 12:30-1:30 p.m.

Newborn Screening Infographic (PDF)


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.