Newborn Screening: Krabbe Disease—Newborn Screening Panel Nomination

Wisconsin health care providers can nominate a condition to add to the Wisconsin newborn screening panel. The panel is part of the Wisconsin Newborn Screening program.

The purpose of this page is to show providers the nomination process for Krabbe disease.

What is Krabbe disease

The Genetic and Rare Diseases Information Center (part of the National Institutes of Health) defines Krabbe disease:

“Krabbe disease is an inherited condition that primarily affects the nervous system. The signs and symptoms of the condition and the disease severity differ by type. Babies affected by early-onset (infantile) Krabbe disease, the severe form of the condition, typically develop features in the first six months of life. Symptoms of infantile Krabbe disease may include:

• Irritability.
• Failure to thrive.
• Slowed development.
• Progressive muscle weakness, hearing loss, and vision loss.”

Nomination process for Krabbe disease

The first nomination for Krabbe disease

• April 9, 2015—Wisconsin Department of Health Services (DHS) received a nomination of Krabbe Disease (PDF) to add it to the newborn screening panel
• Nov. 16, 2015—The Wisconsin Newborn Screening Metabolic Subcommittee met and considered the nomination. In a 7–0 vote, they forwarded the recommendation to the Newborn Screening Umbrella Committee.
• Dec. 4, 2015—The Wisconsin Newborn Screening Umbrella Committee agreed with the recommendation. They forwarded it to the Secretary’s Advisory Committee on Newborn Screening.
• Jan. 25, 2016—The Secretary’s Advisory Committee on Newborn Screening considered the nomination. The Committee did not support the addition of Krabbe disease to the state of Wisconsin newborn screening panel. Report on Nomination to Newborn Screening for Krabbe Disease in Wisconsin (PDF) to the DHS Secretary.
• Aug. 30, 2016—Based on the recommendation, the Secretary did not move forward with adding Krabbe disease to the newborn screening panel. View the Krabbe response letter (PDF).

Second nomination for Krabbe disease

• March 9, 2020—The Wisconsin Newborn Screening (NBS) Program received a nomination submitted on March 9, 2020, to add Krabbe disease to the Newborn Screening Panel. Nomination of Krabbe Disease (PDF).
• April 17, 2020—The Metabolic Subcommittee considered the nomination during a meeting on April 17, 2020, and voted that some of the criteria necessary for conditions to be added to the NBS panel of conditions in the state of Wisconsin were not met and more information was needed prior to recommending adding the condition to the Wisconsin Newborn Screening panel. The subcommittee forwarded their recommendation to the Umbrella Committee.
• May 1, 2020—The NBS Umbrella Committee considered the nomination during a meeting on May 1, 2020, and similarly voted that some of the criterion were not met and more information was needed in order to recommend adding the condition to the Wisconsin Newborn Screening panel. The Umbrella Committee forwarded their recommendation to the Secretary's Advisory Committee on Newborn Screening (SACNBS).
• May 15, 2020—The Secretary’s Advisory Committee on Newborn Screening (SACNBS) considered the nomination on May 15, 2020, and forwarded a report, 2020 (PDF) to the Secretary of the Department of Health Services. Given concerns that Krabbe disease did not clearly meet all the criteria, a motion was made to table the nomination of Krabbe disease. The motion to table was seconded, then unanimously approved by the committee.
• Feb 3, 2021—The DHS Secretary did not approve (PDF) the addition of Krabbe disease to the Newborn Screening Panel.

Third nomination for Krabbe disease

• March 17, 2025--The Wisconsin Newborn Screening (NBS) Program received a nomination submitted on March 17, 2025, for the  nomination to add Krabbe disease (pdf) to the newborn screening panel.
• April 11, 2025—The Metabolic Subcommittee considered the nomination during a meeting on April 11, 2025, and with additional information provided, voted that the condition did meet all criteria. The subcommittee recommended the condition be added to the Wisconsin Newborn Screening panel. The subcommittee forwarded their recommendation to the Umbrella Committee.
• May 2, 2025—The NBS Umbrella Committee considered the nomination during a meeting on May 2, 2025, and similarly voted to recommend adding the condition to the Wisconsin Newborn Screening panel. The Umbrella Committee forwarded their recommendation to the Secretary's Advisory Committee on Newborn Screening (SACNBS).
• September 19, 2025—The SACNBS considered the nomination on September 19, 2025, and recommended the condition be added to the Wisconsin Newborn Screening panel., The committee forwarded a report, 2025 (pdf) to the Secretary of the Department of Health Services.
• February 17, 2026—The DHS Secretary approved (pdf) the addition of Krabbe disease to the Wisconsin Newborn Screening Panel.

Learn more about Administrative rulemaking at DHS and the Wisconsin legislature. If you have questions about the nomination process, contact the Newborn Screening Program at DHSNewbornScreening@dhs.wisconsin.gov.