Contact Info
Newborn Screening Program Information:
Newborn Screening Advisory Committee (NSAC)
Disorder coming soon:
The following new conditions have been approved for addition to Minnesota's newborn screening panel:
- Mucopolysaccharidosis Type II (MPS II)
- Metachromatic Leukodystrophy (MLD)
Implementation is currently in progress and screening has not yet begun.
Have questions about any of the information seen here? Please contact the advisory committee coordinators at health.nsac@state.mn.us.
The Advisory Committee on Heritable and Congenital Disorders, also called the Newborn Screening Advisory Committee (NSAC), was established in 2003. The NSAC was created to provide advice and recommendations to the Minnesota Commissioner of Health concerning tests and treatments for disorders found in newborn children (authorizing legislation: Minnesota Statute 144.1255).
Next NSAC meetings
April 14, 2026 | 1 - 4 p.m. | Wilder Foundation, St. Paul, MN Teams Meeting Link
June 16, 2026 | 2 - 3:30 p.m. | Virtual Teams Meeting Link
Oct. 20, 2026 | 1 - 4 p.m. | Wilder Foundation, St Paul, MN
NSAC membership
Members of the NSAC includes, but is not limited to, the following:
- Parents and other consumers
- Primary care providers
- Clinician and researchers specializing in newborn disorders and disorders
- Genetic counselors
- Birth hospital representatives
- Newborn screening laboratory professionals
- Nutritionists
- Other experts as needed
Advisors serve for four year terms and can reapply at the end of their term.
Currently appointed advisors include:
- Rae Blaylark (Chair) – Sickle Cell Foundation of Minnesota, parent
- Katie Pfister (Vice Chair) – University of Minnesota, Neonatology
- Alex Boucher – University of Minnesota, Hematology
- Annamarie Saarinen – Newborn Foundation
- Brooke Moore – Children’s Minnesota, Pulmonology
- Christen Ebens – University of Minnesota, Immunology
- Courtney Jarboe – University of Minnesota, Bioethics and Metabolism
- Dietrich Matern – Mayo Clinic, Laboratory Medicine and Pathology
- Emelia Rogers – Gillette Children’s, Social Work
- Jennifer Arveson – Pacer Parent to Parent Program, Parent
- Kaitlyn Campbell - parent
- Kali Schreiner – Gillette Children’s, Genetic Counselor
- Kathy Stagni – Organic Acidemia Association, Executive Director, Parent
- Patricia Hall – Mayo Clinic, Laboratory Medicine and Pathology
- Queenie Tan – Mayo Clinic, Clinical Genomics
- Randal Richardson – Gillette Children’s, Neuromuscular
- Renee Temme – Children’s Minnesota, Genetic Counselor
- Robert Jacobson – Mayo Clinic, Primary Care
- Susan Berry – University of Minnesota, Genetics and Metabolism
- Teresa Rink – Children’s Minnesota, nutritionist
The following positions are vacant. Applications can be submitted anytime through the Secretary of State.
- Birth hospital representative
- Nutritionist
- Parent or other consumer
- Primary Care Provider
Applications are reviewed by a steering committee composed of MDH staff and presented to the Commissioner of Health for final appointment decisions.
Any questions about vacancies or the appointment process can be directed to health.nsac@state.mn.us.
Conditions reviewed and status
Below is a summary of the conditions that have been nominated and/or considered for addition to the Minnesota newborn screening panel since 2015.
| Condition | NSAC Initial Discussion | NSAC Vote | Commissioner Approval |
|---|---|---|---|
| Fabry disease | 4/2025
4/2015 | Declined 6/2026 Declined 10/2015 | - |
| Gaucher disease | 4/2025
4/2015 | Declined 6/2026 Declined 10/2015 | - |
| Metachromatic Leukodystrophy (MLD) | 4/2024 | Approved 4/2025 Letter to Commissioner (PDF) Declined 10/2024 | Approved Commissioner Response 4/2025 (PDF) |
| Duchenne Muscular Dystrophy (DMD) | 5/2022 | Approved 10/2023 Letter to Commissioner (PDF) | Approved Commissioner Response 1/2024 (PDF) |
Guanidinoacetate methyltransferase | 10/2022 (RUSP Condition) | Approved 6/2023 Letter to Commissioner (PDF) | Approved Commissioner Response 8/2023 (PDF) |
Mucopolysaccharidosis Type II ( | 10/2022 (RUSP Condition) | Approved 6/2023 Letter to Commissioner (PDF) | Approved Commissioner Response 8/2023 (PDF) |
| Krabbe disease | 5/2022 | Approved 6/2023 Letter to Commissioner (PDF) | Approved Commissioner Response 8/2023 (PDF) |
| Congenital Cytomegalovirus (cCMV) | 10/2021 | Approved 1/2022 Letter to Commissioner 2/2022 (PDF) | Approved Commissioner Response 2/2022 (PDF) |
| Spinal muscular atrophy (SMA) | 10/2016 | Approved 10/2017 Letter to Commissioner 12/2017 (PDF) | Approved Commissioner Response 12/2017 (PDF) |
| X-linked adrenoleuko- dystrophy (X-ALD) | 10/2015 | Approved 10/2015 Letter to Commissioner 12/2015 (PDF) | Approved Commissioner Response 4/2016 (PDF) |
| Mucopolysacch- aridosis type 1 (MPS I) | 4/2015 | Approved 10/2015 Letter to Commissioner 12/2015 (PDF) | Approved Commissioner Response 4/2016(PDF) |
| Pompe disease | 4/2015 | Approved 10/2015 Letter to Commissioner 12/2015 (PDF) | Approved Commissioner Response 4/2016 (PDF) |
| Krabbe disease | 4/2015 | Declined 10/2015 Letter from Committee Chair 12/2015 (PDF) | - |
| Niemann-Pick A/B | 4/2015 | Declined 10/2015 Letter from Committee Chair 12/2015 (PDF) | - |
Nominate a condition for newborn screening
In 2019, we established a new process by which conditions can be nominated for addition to or removal from Minnesota's newborn screening panel.
You must be a Minnesota resident to nominate a condition as the benefits and harms of screening are to Minnesota families. If you are a Minnesota resident and would like to nominate a condition, please contact the NSAC coordinators at health.nsac@state.mn.us.
The NSAC coordinators will follow-up with you, invite you to the Public Health Laboratory for a tour, discuss the condition you wish to nominate, and describe the full nomination process. Following this meeting, coordinators will provide you with the condition nomination form and conflict of interest forms. Coordinators are available to support nominators throughout their submission process.
Condition review process
In 2019, we established an improved process by which conditions are reviewed for addition to Minnesota's newborn screening panel. Conditions previously added to the newborn screening panel underwent a separate review process.
What is the process for considering the addition of a condition to the Minnesota newborn screening panel?
Review Process flowchart (PDF)
Part of the review process is determining if the nominated condition meets the following key criteria:
Criterion 1: There is support from an appropriate screening facility and the nominated condition is considered feasible to add (i.e., newborn screening lab for blood spot screens and hospitals for point of care screens).
Criterion 2: Clinical specialist(s) are available, ready to accept referrals, and willing to manage patients found through screening.
Criterion 3: The nominated condition can be found between 24 and 48 hours of life through screening but cannot be identified clinically in that time frame.
Criterion 4: There is a screening test available now or expected within 12 months that can be done quickly and is successful in finding affected newborns.
Criterion 5: There is safe and effective treatment and/or intervention available which provides significant improvement in the quality of life when administered early.
Criterion 6: There is an infantile onset form of this condition.
Newborn screening at the national level
There are multiple national partners working to establish a workgroup to review conditions. The Secretary of Health and Human Services gives the final approval of all recommendations for condition addition.
What is the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC)?
The Advisory Committee on Heritable Disease in Newborn and Children (ACHDNC) was terminated as of March 2025. To learn more about the work previously done by the ACHDNC, visit: Advisory Committee on Heritable Disorders in Newborns and Children | HRSA.
Meeting agendas and minutes
Oct. 20, 2026
- Agenda (PDF)
- Minutes (PDF)
June 16, 2026
- Agenda (PDF)
- Minutes (PDF)
April 14, 2026
- Agenda (PDF)
- Minutes (PDF)
Oct 14, 2025
Aug 20, 2025
April 15, 2025