Newborn Screening Program Information:
For more information on Minnesota's newborn screening advisory committees, contact the Newborn Screening Program at 800-664-7772.
The Advisory Committee on Heritable and Congenital Disorders, also called the Newborn Screening Advisory Committee (NSAC), provides advice and recommendations to the Minnesota Commissioner of Health concerning tests and treatments for disorders found in newborn children.
Have questions about any of the information seen here? Please contact the committee coordinators:
Phone: (651) 201-5670
Phone: (651) 201-5922
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) - details below. Getting a disorder added to the RUSP is the preferred method and would impact all state newborn screening programs.
However, Minnesota recognizes that the federal process is not available to all families and individuals and therefore established a process by which individuals or groups can nominate a condition for addition to Minnesota's newborn screening panel. A nominated condition will be considered based on the following criteria:
Criterion 1: Mandated testing should be limited to conditions that cause serious health risks in childhood that are unlikely to be detected and prevented in the absence of newborn screening.
Criterion 2: For each condition, there should be information about the incidence, morbidity and mortality, and the natural history of the disorder.
Criterion 3: Conditions identified by newborn screening should be linked with interventions that have been shown in well-designed studies to be safe and effective in preventing serious health consequences.
Criterion 4: The interventions should be reasonably available to affected newborns.
Criterion 5: Appropriate follow-up should be available for newborns that have a false positive newborn screen.
Criterion 6: The characteristics of mandated tests in the newborn population should be known, including specificity, sensitivity, and predictive value.
Criterion 7: If a new sample collection system is needed to add a disorder, reliability and timeliness of sample collection must be demonstrated.
Criterion 8: Before a test is added to the panel, the details of reporting, follow-up, and management must be completely delineated, including development of standard instructions, identification of consultants, and identification of appropriate referral centers throughout the state/region.
Criterion 9: Recommendations and decisions should include consideration of the costs of the screening test, confirmatory testing, accompanying treatment, counseling, and the consequences of false positives. The mechanism of funding those costs should be identified. Expertise in economic factors should be available to those responsible for recommendations and decisions.
The process and forms needed to nominate a condition are below:
- A nominator (resident of Minnesota) submits a Nomination Packet for a specific condition. The Nomination Packet must include the nomination form, conflict of interest form(s), and key references.
- When the Minnesota Newborn Screening Program receives the nomination packet, staff will check for completeness. If the packet is complete, it is reviewed by the Newborn Screening Steering Committee and a Newborn Screening Subcommittee. Both committees provide comments to the Newborn Screening Advisory Committee (NSAC). There will also be opportunities for public input through email or in person.
- The nomination is then reviewed by the NSAC, which then makes a recommendation, by written report, to the Minnesota Commissioner of Health.
- The Minnesota Commissioner of Health makes a final decision and responds to the NSAC recommendations as to whether the nominated condition will be added to the newborn screening panel or not.
- The nominator is informed of the decision.
If you would like to nominate a condition to be considered for addition to the Minnesota newborn screening panel, and you are a resident of the state of Minnesota, you must complete two forms and submit them with key references.
- Nomination Form: Please carefully follow the instructions to complete the form. Be sure to include your contact information and any co-sponsoring organizations' information.
- Conflict of Interest Form: Please carefully follow the instructions to complete the form.
- Key References: Include all key references to support each criterion listed on the nomination form. Attach key references as PDF(s) or mail hard copies to the address below.
Newborn Screening Program
Attn: Maggie Dreon or Sondra Rosendahl
601 Robert Street North
P.O. Box 64899
St. Paul, MN 55164
If you need help completing the Nomination Packet, please talk with your healthcare team or a parent group or association.
The current process for nominating a condition to be considered for addition to the newborn screening panel began in 2016 and will be applied to conditions nominated after the process was implemented. Conditions previously added to the newborn screening panel underwent a separate review process. Below are conditions that have been nominated and/or considered for addition to the newborn screening panel. Click on the name of the condition to view the nomination forms and where it is in the process.
- None at this time
- Authorizing Legislation
- 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
- Other experts as needed
- New Advisor Orientation
- Current Newborn Screening Advisory Committee Members
- Application Process
- Selecting Advisors
- Terms of Appointment
Members of the Advisory Committee shall include, but not be limited to, the following:
New advisors need to complete a short orientation training. Returning advisors are welcome to review this training as well. The training reviews newborn screening at the national and state level, provides an overview of the newborn screening process in Minnesota, and describes the role of an advisor. Upon request, a closed captioned version of this training will be provided.
Newborn Screening Advisory Committee Members bios (PDF)
Please follow the link to submit an application. 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.
If you would like to include a resume or curriculum vitae, please email it to email@example.com immediately after you have submitted your application.
Selection is based on review of the applications by the Steering Committee for the Advisory Committee. Final selection of appointed advisors is made by the Minnesota Commissioner of Health.
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.
- What is the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC)?
- What is the Recommended Uniform Screening Panel (RUSP)?
- How do conditions get added to the RUSP?
The ACHDNC is a committee whose mission is to reduce the morbidity and mortality in newborns and children who have, or are at risk for, heritable disorders. The ACHDNC advises the U.S. Department of Health and Human Services 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.
More information about the ACHDNC.
The RUSP is a list of conditions recommended by the ACHDNC and approved by the Secretary of the Department of Health and Human Services 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.
For a condition to be added to the RUSP, it must first be nominated for consideration by submitting a nomination package. The Committee’s Nomination and Prioritization Workgroup reviews the nomination package and provides the ACHDNC Committee with a summary of the information. The Committee 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 Committee. Following discussion, the Committee uses a decision matrix to help them vote to either recommend or not recommend the condition. The Secretary of Health and Human Services makes the final decision on whether or not to add the recommended condition to the RUSP.
More details and information on submitting a nomination package.
The Minnesota statute that mandates newborn hearing screening also created a Minnesota Department of Health Newborn Hearing Screening Advisory committee that meets four times per year to discuss issues surrounding early hearing detection and intervention.
Members of the Newborn Hearing Advisory Committee include parents of children with a hearing loss, advocates with expertise in issues affecting people who are deaf and hard of hearing, health care providers, hospital representatives, and other medical and education experts. One of the main purposes of the advisory committee is to make informed recommendations for newborn hearing screening and hearing loss management. Meetings are open to the public.
Please email EHDI@health.state.mn.us with any questions or comments regarding the Newborn Hearing Screening Advisory Committee.