Genetic Testing Expansion Poised to Dramatically Increase Demand for ALS Specialist Care Across the United States
Key Insights
A new population model projects that genetic testing for ALS will drive a 12% compound annual growth rate in gene-related ALS cases over the next decade, rising from 2,704 to 7,474 individuals.
The number of asymptomatic gene carriers identified through family testing is expected to grow from 10,944 to 26,111, with 42% of states exceeding 100 additional clinic visits per ALS center annually by year 10.
Researchers estimate an average of 4.25 relatives per person with ALS will test positive as gene carriers, each requiring annual monitoring at specialized centers.
A new population modeling study published June 24, 2026, in Neurology® Genetics, an official journal of the American Academy of Neurology, projects that the widespread availability of genetic testing for amyotrophic lateral sclerosis (search) (ALS) will substantially increase demand for specialized ALS clinic visits across the United States over the next decade.
The study, led by Jennifer Morganroth, MD, of Massachusetts General Hospital in Boston, developed a population model to estimate the current and projected number of individuals carrying four common ALS-associated gene variants—SOD1 (search), C9orf72, FUS (search), and TARDBP (search)—as well as their at-risk relatives who carry these variants but remain asymptomatic.
"Emerging genetic therapies along with the expansion of genetic testing are identifying people carrying a genetic risk for ALS who may benefit from early intervention," said Morganroth. "Over 40 ALS-associated genes have been identified. Our study estimated the current number of people in the United States carrying four common ALS gene variants as well as the number of relatives as potential gene carriers and projected that the need for care at specialized ALS centers will greatly increase over the next decade."
Modeling Approach and Key Assumptions
Researchers utilized ALS data from a study conducted in Atlanta, Georgia, and compared it to population figures from the 2023 U.S. Census Bureau estimates, supplemented by ALS case numbers from a national registry. The model assumes that for each person diagnosed with ALS, an average of 4.25 relatives will test positive as gene carriers, with each carrier requiring one annual check-up at a specialized ALS center.
Projected Growth Over the Decade
In 2026, the model estimates 2,704 people in the U.S. will have a gene-related form of ALS, alongside 10,944 asymptomatic gene carriers. At this baseline, most states would see fewer than 50 additional clinic visits per ALS center annually, with 12 states falling in the 50 to 99 range and no states surpassing 100.
By the tenth year, however, the landscape shifts dramatically. The model projects 7,474 individuals with gene-related ALS and 26,111 gene carriers. At that point, only six states remain below 50 additional visits per center annually; 22 states reach 50 to 99 visits; 18 states climb to between 100 and 199; and three states exceed 200 additional visits.
The proportion of states with 100 or more additional visits per ALS center rises from 0% to 42% over the decade, while the percentage of states with fewer than 50 additional visits per clinic falls from 74% to just 12%. The compound annual growth rate from year one to year 10 was approximately 12% for people living with gene-related ALS and 10% for gene carriers.
Implications for Care Delivery
"As more at-risk relatives get genetic testing, the testing will identify more gene carriers, so specialized ALS centers must plan for the long-term care of more people," Morganroth noted. "Anticipating the clinical needs of people with a genetic risk for ALS, and which states may see the greatest increases in this patient population, is essential for improving care and ensuring that clinics are ready as new therapies become available. This will become increasingly important as gene-targeted therapies, biomarker monitoring and preventive trials continue to emerge."
ALS is a rare, progressive neurodegenerative disease affecting nerve cells in the brain and spinal cord. People living with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within five years.
Study Limitations
The authors acknowledged that the predictions are based on a model and are intended to assist with future planning rather than provide exact figures. The model assumes broad genetic testing and follow-up among people living with ALS and their at-risk relatives, which may overestimate the actual need for clinic visits. Morganroth added that future studies should examine more detailed data and explore whether telehealth, combined with increased funding for ALS multidisciplinary care centers, can help support individuals identified as ALS gene carriers.