Overview
- Health and Human Services Secretary Robert F. Kennedy Jr. approved adding Duchenne muscular dystrophy and metachromatic leukodystrophy to the federal Recommended Uniform Screening Panel after scientific review and public comment.
- HHS says identifying these disorders in infancy allows use of FDA‑approved therapies at their most effective window, helping slow progression and preserve quality of life.
- Both conditions are commonly diagnosed around ages four to five, by which time significant functional decline has often occurred, according to HHS.
- The RUSP offers federal guidance rather than a mandate, and states choose whether to adopt each test, with only Minnesota, New York and Ohio currently screening for Duchenne.
- An HHS official urged nationwide alignment with the panel, noting 14 states have introduced legislation to do so and projecting that early discovery could enable life‑saving treatment for more than 8,000 infants annually.