Newborn Screening Program Information:
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 firstname.lastname@example.org 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 email@example.com or call the program at 800-664-7772.
Visit us at the Minnesota State Fair Aug. 27 - Sept. 7!
The 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
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)
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.
|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|
|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.
|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|
|Emily Smith-Lundberg||Representative of a consumer organization representing culturally deaf persons|
Change 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 firstname.lastname@example.org with questions or concerns.
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:
Celebrating Laboratory Professionals Week!
April 19-25, 2015
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.
|Mark Bergeron||Clinician and researcher specializing in newborn diseases and disorders|
|Vikas Bhambhani||Clinician and researcher specializing in newborn diseases and disorders|
|Kirsten Dummer||Clinician and researcher specializing in newborn diseases and disorders|
|Robert Jacobson||Primary care provider|
|Amy Karger||Newborn screening laboratory professional|
|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|
Pulse 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 email@example.com.
Learn more on our MNScreen page!
Get 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.
We would like to give a big thank you to the 1,070 parents and 396 prenatal providers in Minnesota who responded to our survey about newborn screening education in the prenatal period. The survey was distributed in the summer of 2014. Check out our infographic depicting some of our key findings:
For more complete results:
Prenatal Survey Results (PDF)
The newly revised 60-page manual is designed as a quick reference guide for providers on a variety of newborn screening topics. Check it out on our Provider Manual page!
Prefer a printed copy for your nursery? Contact program staff at firstname.lastname@example.org and we'll send you one free of charge!
Newborn screening billboards hit the streets of the Twin Cities!
We are thrilled to announce the launch of a new public awareness billboard campaign. Billboards are located in the Twin Cities metro area with plans to extend the campaign to greater Minnesota later this year. The goal of the campaign is to increase public awareness of newborn screening and to encourage parents and expectant parents to discuss newborn screening with their providers.
ATTENTION BIRTH PROVIDERS AND HOSPITALS:
Revised screening cards and billing process
The Newborn Screening Program has revised the screening cards used in Minnesota. With this new revision, we have a new business process that will change the way we bill your institution. The following documents detail these changes. Please contact Jill Simonetti at 651-201-5469 with any questions.
Early Hearing Detection & Intervention 2013 Annual Report
The Minnesota Department of Health Early Hearing Detection and Intervention (EHDI) Program has released its 2013 Annual Report. Check out program updates and improvements from last year, including legislative changes, quality improvement initiatives, and more.
Legislative changes to MDH retention practices for blood spots and test results set to take effect August 1, 2014
As of August 1, 2014, the Newborn Screening Program may store newborn screening blood spots and test results and use them for program operations as defined by Statute 144.125. If your baby's blood spots are collected on or after August 1, 2014, your baby's test results and any remaining blood spots will automatically be retained by the program unless you direct MDH to destroy them.
For blood spots collected before August 1, 2014, the Newborn Screening Program will continue to destroy newborn screening blood spots and test results according to the following timelines, unless a parent or guardian gives written consent for their extended storage and use:
- blood spots with negative test results are destroyed within 78 days of the date MDH receives the newborn screening card
- blood spots with positive test results are destroyed within 24 months and one week of the date MDH receives the newborn screening card
- all test results are destroyed within 25 months of the last date they are reported
Retention practices for hearing screening results have not changed. Unless parents direct MDH to discontinue storing results, they are stored for a period not to exceed 18 years from an infant's date of birth.
For more information about parental options regarding the retention and/or destruction of test results and blood spots, please refer to the Parental Options page.
The Newborn Screening Program celebrates Lab Professional's Week!
When I first applied for this job, I knew very little about newborn screening as a public health program. But during my interview I began to understand the depth and breadth of the program—how the lab not only tests the blood spots of each baby, but a genetic counselor will also connect the baby's care provider with a specialist if a result shows a baby is at risk for one of the disorders. I learned that dedicated staff members follow each baby with a positive result until he or she is diagnosed with a disorder or ruled as having a false positive result, to make sure all babies are connected with the care they need. And still more staff members are dedicated to designing and creating educational materials for parents and providers to guide them through each step of these processes. By the time I left my interview, I was thrilled about newborn screening!
I have now worked with Minnesota's Newborn Screening Program for five years as an analyst in the lab. As a member of the newborn screening team, I am helping to improve the outcome of—or even save—a baby's life every couple of days. This is truly a special program, and I consider myself lucky to be a part of it.
-Alisha, Laboratory Professional, Minnesota Newborn Screening Program
"Even non-superheroes save lives. I am an average lab rat doing daily tasks such as punching blood spots, running tests, and recording results. It is not a daily event that I uncover a life-threatening condition that affects a newborn, yet each normal result impacts babies and their families as well. Finding "nothing" is just as rewarding for me as finding a positive result. Each act saves lives and helps families know how to best care for their child. I do not need to save babies in a dramatic fashion to feel good about the importance of the job I do daily."
-Dan, Laboratory Specialist, Minnesota Newborn Screening Program
(Dan and several of his laboratory colleagues are pictured above)
Why pulse oximetry screening?
With the recent addition of critical congenital heart disease (CCHD) to Minnesota's screening panel, learn more about why pulse oximetry screening is an important part of newborn care. This video was made in collaboration with the University of Minnesota Amplatz Children's Hospital and the Newborn Foundation.
Newborn Heart Screening Video
(published February 25, 2014)
Conquering Rare Diseases Tweetchat: Tuesday, Feb. 1
Join the Newborn Screening Program as we take part in a tweetchat with Dr. Richard Besser, Chief of the ABC News Medical/Health Unit on Tuesday, Feb. 1 at 12 p.m. CST. The chat is cosponsored by the National Organization for Rare Diseases (NORD). To join the chat, use hashtag #abcDRBchat. To learn more, visit the Rare Disease Day USA website.
Rare Disease Day USA website
(published February 24, 2014)
Newborn Screening Lawsuit Settled
The Minnesota Department of Health (MDH) has settled the lawsuit over its storage and use of newborn screening residual dried blood spots and test results. As a result of the case being settled, the district court order to preserve these blood spots and test results has been lifted and the department has begun destroying approximately 1.1 million archived blood spots and test results as required by a Minnesota Supreme Court ruling.
Lawsuit settlement allows newborn screening program to move forward - News Release
(published January 28, 2014)
Public Health Laboratory Fiscal Year 2013 Annual Report
The MDH Public Health Laboratory Division's annual report is now online. Check out Newborn Screening Program updates from the past year, including:
- The implementation of screening for severe combined immune deficiency (SCID)
- Preparations for universal pulse oximetry screening for critical congenital heart disease (CCHD)
- Updates on hearing screening for out-of-hospital births
- Photos from newborn screening's 50th anniversary celebrations
- The facts and figures of newborn screening in fiscal year 2013
- A family's story about how newborn screening for congenital hypothyroidism changed their lives
2013 Annual Report – Public Health Laboratory (PDF)
(published December 16, 2013)
Online Ordering for Education Materials and Forms
Providers and parents can order free education materials and forms online through the Ordering Education Materials and Forms page. Just follow the link on the page, enter the relevant contact information and quantities needed, and click "Submit Request." Orders will be filled within 3-5 business days!
Education Materials and Forms
(published November 19, 2013)