Jennifer Morganroth, MD, MBA

As genetic testing becomes more prevalent for identifying individuals at risk for amyotrophic lateral sclerosis (ALS), there is an urgent need to predict where care and infrastructure demands will be greatest.

A new study by Jennifer Morganroth, MD, MBA, of the Mass General Brigham Neuroscience Institute, and co-authors at Columbia University aimed to provide the first national framework for projecting the clinical impact of genetic testing and gene-targeted therapies on ALS clinics.

Using a population-based model, the researchers estimated the number of symptomatic and asymptomatic ALS gene carriers across all 50 states and projected how these numbers will grow over the next decade, translating the projections into anticipated clinic visit requirements. The findings revealed approximately 2,700 symptomatic and 11,000 asymptomatic carriers in 2026, with projections increasing to about 7,500 and over 26,000, respectively, by 2035.

This significant growth indicates that while current clinic setups may absorb the initial rise in demand, nearly half of U.S. states will require substantial infrastructure expansions to accommodate a potential 50-200 more visits per clinic per year within a decade.

While the authors assumed a broad uptake of genetic testing for capacity planning and note that the preparedness-oriented model may overestimate real-world demand, the results of this study emphasize the need for proactive planning—including scalable solutions like telehealth and regional partnerships— to ensure timely and equitable care for individuals at genetic risk for ALS.

Published in Neurology® Genetics, an official journal of the American Academy of Neurology, on June 24, 2026 | Read the paper: “Preparing ALS Clinics to Provide Longitudinal Care for Individuals Carrying ALS Risk Variants”

Summary reviewed by: Jennifer Morganroth, MD, MBA, lead author