Newborn Screening Program Information:
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 firstname.lastname@example.org.
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: 174KB/7 pages)
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 email@example.com 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: 2.39MB/15 pages)
(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)