Newborn Screening Program Information: Newborn Screening Advisory Committee (NSAC) - Minnesota Dept. of Health

Newborn Screening Program Information:
Newborn Screening Advisory Committee (NSAC)

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Have questions about any of the information seen here? Please contact the advisory committee coordinators at health.nsac@state.mn.us.

About

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).

Newborn screening is a system that requires the efforts of many, so the NSAC coordinators formed a Steering Committee in 2015 to serve the following functions: make recommendations to the Commissioner of Health for advisor appointments, set the NSAC meeting agendas, and provide guidance on condition nominations.

The conditions recommended by the NSAC and approved by the Commissioner of Health are found in newborn children through testing performed and/or monitored by the MDH Newborn Screening program. Children who receive follow-up diagnostic testing and are confirmed to have the condition can benefit from connections to resources and services. The Newborn and Child Follow-Up unit within the MDH Children and Youth with Special Health Needs Program provides these follow-up connections for children with a newborn screening condition.


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 Nomination Submission Steering Committee Review NSAC Initial Discussion NSAC Vote Commissioner Approval
Spinal muscular atrophy (SMA) - - 10/2016 Approved 10/2017
Letter to Commissioner 12/2017 (PDF)
Approved Commissioner's Response 12/2017 (PDF)
X-linked adrenoleukodystrophy (X-ALD) - - 10/2015 Approved 10/2015
Letter to Commissioner 12/2015 (PDF)
Approved Commissioner's Response 4/2016 (PDF)
Mucopolysacharidosis type 1 (MPS I) - - 4/2015 Approved 10/2015
Letter to Commissioner 12/2015 (PDF)
Approved Commissioner's Response 4/2016(PDF)
Pompe disease - - 4/2015 Approved 10/2015
Letter to Commissioner 12/2015 (PDF)
Approved Commissioner's Response 4/2016 (PDF)
Krabbe disease - - 4/2015 Declined 10/2015
Letter from Committee Chair 12/2015 (PDF)
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Gaucher disease - - 4/2015 Declined 10/2015
Letter from Committee Chair 12/2015 (PDF)
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Fabry disease - - 4/2015 Declined 10/2015
Letter from Committee Chair 12/2015 (PDF)
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Niemann-Pick A/B - - 4/2015 Declined 10/2015
Letter from Committee Chair 12/2015 (PDF)
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How is a Condition Reviewed by the Newborn Screening Advisory Committee?

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 the flowchart (text version available).

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.

How do I Nominate a Condition for Addition to the Minnesota Newborn Screening Panel?

In 2019, we established a new process by which conditions can be nominated for addition to Minnesota's newborn screening panel.

If you would like to nominate a condition to considered for addition to the Minnesota newborn screening panel, please contact the NSAC coordinators at health.nsac@state.mn.us. The NSAC coordinators will follow-up with you to invite you to the Public Health Laboratory for a tour and discuss the condition you wish to nominate and describe the advisory committee process.

Following the discussion with the NSAC coordinators, should you want to formally nominate a condition, you must complete the Condition Nomination Form (PDF) and the Conflict of Interest Disclosure Form - Newborn Screening Condition Nomination (PDF).

Please carefully follow the instructions to complete each form. If you need help completing these forms, please talk with your healthcare team or a parent group or association. If you have questions about the forms, contact the NSAC coordinators.

Once completed, submit your nomination to health.nsac@state.mn.us or by mailing the forms to the address below:

Minnesota Department of Health
Newborn Screening program
Attn: Coordinators of the Advisory Committee
P.O. Box 64899
St. Paul, MN 55164-0899

Newborn Screening at the National Level

The Minnesota Newborn Screening program is often times in alignment with the Recommended Uniform Screening Panel (RUSP) set forth by the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). Getting a disorder added to the RUSP is the preferred method as it could impact all state newborn screening programs.

What is the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC)?

The ACHDNC is a federal committee whose mission is to reduce the morbidity and mortality in newborn and children who have, or are at risk for, heritable disorders. The ACHDNC advises the U.S. Department of Health and Human Services (DHHS) Secretary on matters related to universal newborn screening, including tests, technologies, guidelines, and standards. The ACHDNC makes recommendations to the Secretary with regards to what conditions should be included as part of the Recommended Uniform Screening Panel.

Learn more about the ACHDNC.

What is the Recommended Uniform Screening Panel (RUSP)?

The RUSP is a list of conditions recommended by the ACHDNC and approved by the DHHS Secretary that every newborn in the United States should be screened for as part of their state's newborn screening program. Although states ultimately determine what disorders to include on their newborn screening panel, the RUSP provides a uniform list of disorders that are supported by the Committee and the Secretary.

View the current RUSP.

How do conditions get added to the RUSP?

For a condition to be added to the RUSP, it must be nominated for consideration by submitting a nomination package. The Committee's Nomination and Prioritization Workgroup reviews the nomination package and provides the ACHDNC with a summary of the information. The ACHDNC then decides if there is enough evidence available to send it to an external Condition Review Workgroup. The Condition Review Workgroup does an evidence-based review and then presents the information to the ACHDNC. Following discussion, the ACHDNC uses a decision matrix to help them vote to either recommend or not recommend the condition. The DHHS Secretary makes the final decision on whether or not to add the recommended condition to the RUSP.

Details and information about submitting a nomination package.

Minnesota's Newborn Screening Advisory Committee (NSAC) and Steering Committee 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

Current Members (PDF)

Upcoming Appointments

On March 6, 2020, the commissioner of health will appoint or reappoint the following people to the Newborn Screening Advisory Committee (also referred to as the Advisory Committee on Heritable and Congenital Disorders) for terms ending in January 2024.

Appointees and Position

Appointee Position
Susan Berry A clinician or researcher specializing in newborn diseases and disorders
Courtney Jarboe An other expert as needed representing fields such as emerging technologies and health insurance
Dietrich Matern A newborn screening laboratory professional
Brooke Moore A clinician or researcher specializing in newborn diseases and disorders
Eva Morava-Kozicz A clinician or researcher specializing in newborn diseases and disorders
Kathy Stagni A parent or other consumer
Renee Temme A genetic counselor
Susan Berry A clinician or researcher specializing in newborn diseases and disorders
Marcelo Vargas A clinician or researcher specializing in newborn diseases and disorders
Joseph Williams A parent or other consumer

Members of the Steering Committee includes:

  • Chair of NSAC
  • Vice Chair of NSAC
  • Leadership staff from the Newborn Screening program and the Children and Youth with Special Health Needs Program
  • NSAC coordinators

How do I Become an Advisor on the Newborn Screening Advisory Committee?

Vacancies

The list of vacancies will be posted here in Fall of 2022 for appointments in early 2023.

Application Process

Submit an application online.

If you would like to include a cover letter, resume or curriculum vitae, please email it to open.appointments@state.mn.us immediately after you have submitted your application.

Selecting Advisors

The Steering Committee reviews the applications and makes recommendations to the Commissioner of Health. Final selection of appointed advisors is made by the Minnesota Commissioner of Health.

Terms of Appointment

Advisors are appointed to the committee by the Minnesota Commissioner of Health. Appointed advisors serve four-year terms and can reapply at the end of their term. Appointments may be renewed indefinitely, at the discretion of the Commissioner.

Meeting Agendas and Minutes

January 11, 2022

  • Agenda (PDF)
  • Minutes (PDF)

April 12, 2022

  • Agenda (PDF)
  • Minutes (PDF)

October 26, 2021

  • Agenda (PDF)
  • Minutes (PDF)

April 20, 2021

October 6, 2020

April 7, 2020

Meeting was canceled due to COVID-19

October 15, 2019

April 23, 2019

October 9, 2018

April 17, 2018

October 10, 2017

April 25, 2017

October 11, 2016

April 26, 2016