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Wisconsin Newborn Screening for SMA

Spinal muscular atrophy (SMA) is an inherited (genetic) condition that affects the nerve cells that carry messages from the brain to the muscles of the body. Newborn screening for SMA allows early diagnosis and treatment for SMA. Find more information about SMA, newborn screening for SMA, and SMA diagnosis and treatment.

With funding from the Health Resources and Services Administration (H4NMC49277), we have established this Wisconsin Newborn Screening for SMA dashboard and will update the information annually. The screening test is done at the Wisconsin State Laboratory of Hygiene, and clinical care is provided at American Family Children’s Hospital in Madison and Children’s Wisconsin in Milwaukee.

Newborn feet with heel test and band aid.

General Information

Program starting date: 10/15/2019

Period of data report: 10/15/2019 – 12/31/2024

Infographic showing details about Wisconsin infants screened for spinal muscular atrophy since October 15, 2019.

Since October 15, 2019, there were 310,930 Wisconsin newborns screened for spinal muscular atrophy (SMA). There were 34 reported screen positive newborns, and all 34 were confirmed.

Confirmed Screen Positive Cases

Infographic detailing the number of Wisconsin newborns who were confirmed positive for spinal muscular atrophy.

Of the 34 Wisconsin newborns confirmed positive for SMA, 18 were male and 16 were female.

Race Distribution

Two pie charts showing the race distribution of Wisconsin newborns screened for spinal muscular atrophy and the race distribution of Wisconsin newborns confirmed positive for spinal muscular atrophy.

The pie chart on the far left shows race distribution of all Wisconsin newborns screened for SMA. The pie chart on the near left shows race distribution of Wisconsin newborns confirmed positive for SMA.

Ethnicity Distribution

Two pie charts showing the ethnicity distribution of Wisconsin newborns screened for spinal muscular atrophy and the ethnicity distribution of Wisconsin newborns confirmed positive for spinal muscular atrophy.

The pie chart on the far left shows ethnicity distribution of all Wisconsin newborns screened for SMA. The pie chart on the near left shows ethnicity distribution of Wisconsin newborns confirmed positive for SMA.

Location of Children with SMA

A light green map of Wisconsin with white dots indicating where Wisconsin children who screened positive for spinal muscular atrophy live throughout the state.

Wisconsin children who screened positive for SMA live throughout the state. The general locations where they live are noted by white dots. Care for newborns and children with SMA is provided at two locations: American Family Children’s Hospital, affiliated with UW–Madison, in Madison, and Children’s Wisconsin, affiliated with Medical College of Wisconsin, in Milwaukee.

Newborn Screening Timeline

An infographic detailing the timeline between newborn screen specimen collection, the arrival at the lab, and lab results.
A newborn screening timeline.

The goal of spinal muscular atrophy (SMA) newborn screening is to identify newborns with the condition and begin treatment as soon as possible.

Newborn screening specimen collection typically occurs between 1 and 2 days after birth. The specimen typically arrives at the lab 2 to 3 days after collection, and the lab typically finalizes results within 1 to 2 days.

It typically takes 5 to 7 days after birth for a family to be notified of a positive screen for SMA through newborn screening. A family’s first visit with a neurologist typically happens around 1 week after birth, and treatment is typically initiated within three weeks of birth.

Health Outcomes of SMA Newborns

A bar chart detailing the health outcomes of newborns whose spinal muscular atrophy is found by newborn screening versus those whose spinal muscular atrophy is not found by newborn screening.

The graph “Health Outcomes of SMA Newborns” shows that when SMA was found through newborn screening and children received treatment, their outcomes were healthier than those of children whose SMA was not found by newborn screening.

The green bars represent children with SMA not found by newborn screening. They can have breathing, feeding, and motor problems.

The blue bars represent children with SMA found by newborn screening. Early treatment leads to healthier outcomes.