On October 8, 2024, the Minnesota Advisory Committee on Heritable and Congenital Disorders decided not to include metachromatic leukodystrophy (MLD) in the state's newborn screening panel. MLD is a genetic disorder affecting the brain and nervous system, leading to progressive decline in motor and cognitive functions. Symptoms can range from difficulty walking and talking to personality changes and seizures, with the most severe form causing early childhood mortality. The committee reviewed the evidence and concluded that current information does not support adding MLD to the screening panel at this time.
A formal communication will be sent to the nominators detailing the decision and summarizing key points from the discussion and evidence assessment. Despite the current decision, the committee plans to continue monitoring new data on MLD. They have also agreed to reconvene the evidence review committee, with updated findings to be discussed at the committee's meeting in April 2025. Additionally, MLD is undergoing a full evidence review at the federal level, with the Advisory Committee on Heritable Diseases in Newborns and Children (ACHDNC) expected to vote on the condition in May 2025.
The decision reflects the committee's ongoing commitment to consider evolving scientific knowledge and the stories shared by families, healthcare providers, and advocates. As research advances and new information becomes available, the potential for revisiting MLD as a candidate for newborn screening in Minnesota remains open.
