Genetic testing could sharply increase demand for ALS specialist care

The availability of genetic testing for amyotrophic lateral sclerosis (ALS) for people with a family member diagnosed with the disease is expected to greatly increase the number of clinic visits to specialized ALS centers over the next decade, according to a study published June 24, 2026, in Neurology^® Genetics, an official journal of the American Academy of Neurology.

ALS is a rare, progressive neurodegenerative disease that affects nerve cells in the brain and the 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.

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. 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."

Jennifer Morganroth, MD, study author, Massachusetts General Hospital, Boston and member, American Academy of Neurology

For the study, researchers developed a population model to estimate how many people in each state may have ALS caused by four common gene variants, SOD1, C9orf72, FUS and TARDBP, as well as the number of people related to them who carry these gene variants but do not have symptoms. They looked at ALS data from a study in Atlanta, Georgia, and compared it to population numbers in the 2023 U.S Census Bureau population estimates. They also used ALS case numbers from a national registry.

They estimate for each person with ALS, there would be an average of 4.25 relatives who test positive as gene carriers, and those relatives would need one check-up per year at an ALS center.

Researchers projected, in 2026, that 2,704 people in the U.S. will have a gene-related form of ALS and there would be 10,944 gene carriers. Researchers found that for most states, fewer than 50 extra clinic visits were needed annually per ALS center, with 12 states in the range of 50 to 99 additional clinic visits and no states surpassing 100.

By the tenth year, the demand for clinic visits increases substantially. The model projects 7,474 people with a gene-related form of ALS and 26,111 gene carriers. Only six states remain below 50 visits per ALS center annually; 22 states have 50 to 99 visits; 18 states reach 100 to 199; and three exceeded 200.

The proportion of states with 100 or more additional visits per ALS center rises over the decade from 0% to 42%, while the percentage of states with fewer than 50 additional visits per clinic falls from 74% to 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.

"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," said Morganroth. "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."

A limitation of the study was that the predictions are based on a model and are meant to help plan for the future, not to give exact numbers. The model assumes broad genetic testing and follow-up among people living with ALS and their at-risk relatives, which may overestimate the need for clinic visits.

Morganroth noted that future studies should look at more detailed data and whether telehealth in addition to increased funding for ALS multidisciplinary care centers can support people who are ALS gene carriers.