State Begins Testing Newborns for Krabbe Disease

February 29, 2024

Minnesota’s Newborn Screening Program began universal screening for Krabbe disease on February 26. The MMA has been a long-time supporter of the state’s newborn screening program.  

“Minnesota has one of the most comprehensive newborn screening programs in the country,” said Minnesota Commissioner of Health Brooke Cunningham, MD, MA, PhD. “Adding Krabbe disease to the long list of conditions the lab already screens for will help identify more children earlier, slow the progression of their symptoms and even increase their lifespan.” 

Krabbe disease is a rare, genetic condition in which the newborn cannot fully break down certain fats. These fats build up in the body and can lead to damage to the nerves affecting a person’s ability to eat, walk and speak. In the most severe form, symptoms can progress to death within the first two years of life. 

There is no cure for Krabbe disease, but treatment can help manage symptoms and improve quality of life. Currently, the only treatment is a stem cell transplant, which is ideally performed before a baby identified with infantile Krabbe disease is 30 days old. Due to the importance of early treatment, the process from screening to diagnostic exams and treatment must move quickly.  

Identifying infantile Krabbe disease in newborns allows families to receive early diagnosis and monitoring, education and appropriate medical care. When newborn screening identifies a baby at risk for infantile Krabbe disease, the family is referred by their physician to metabolic specialists at M Health Fairview, which is currently the only center in the region equipped to perform stem cell transplants in newborns. 

Since 1964, when Minnesota started screening for PKU (phenylketonuria), blood samples from all Minnesota newborns have been sent to the Minnesota Department of Health’s (MDH) Public Health Lab for screening unless their parents opt out. The lab now screens all babies born in Minnesota for more than 60 conditions. 

In 2023, the lab screened more than 60,400 newborns from across the state and recommended early intervention and treatment for conditions detected in about 400 of them. When a condition is detected, MDH contacts the child’s healthcare provider to discuss the result, educate them about the condition and review the recommended follow-up.  

More information about newborn screening is available on the MDH website at Newborn Screening Program.