Number of ALS Clinic Visits for Risk Variant Carriers Set to Increase

WEDNESDAY, July 1, 2026 (HealthDay News) — Gene-targeted testing is projected to increase the number of amyotrophic lateral sclerosis (ALS) clinic visits for risk variant carriers, according to a study published online June 24 in Neurology Genetics.

Jennifer Morganroth, M.D., from Massachusetts General Hospital in Boston, and colleagues estimated the number of symptomatic individuals with gene-positive ALS and asymptomatic gene carriers across U.S. states over the next decade. State-level ALS prevalence and incidence were calculated using two approaches. Published frequencies of SOD1, C9orf72, FUS, and TARDBP pathogenic variants were used to estimate gene-positive cases. Assuming autosomal-dominant inheritance with about five first-degree and about seven second-degree living relatives per proband, at-risk relatives were modeled; surveillance needs were modeled as one annual visit per asymptomatic carrier.

The researchers found that the model estimated 2,704 symptomatic gene-positive ALS carriers in year one (2026). A total of 10,944 asymptomatic carriers were projected nationwide with an average of 4.25 carrier relatives per proband. Most states required <50 additional visits per clinic annually; 12 states required 50 to 99 additional visits, and none exceeded 100. The model projected 7,474 symptomatic and 26,111 asymptomatic carriers by 2035 (year 10). There was a substantial shift in state-level demand, with six states remaining below 50 visits; 22 reaching 50 to 99; 18 reaching 100 to 199; and three exceeding 200 visits per clinic annually.

“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,” Morganroth said in a statement.

Several authors disclosed ties to the biopharmaceutical and medico-legal industries.

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