Model Predicts Increased ALS Clinic Visits with Expanded Genetic Testing

As access to genetic testing expands and gene-targeted therapies emerge, more at-risk relatives are being identified and seeking evaluation and longitudinal monitoring. Planning clinic capacity around this evolving referral stream is becoming increasingly important for neuromuscular centers.

Researchers, including a study author from Massachusetts General Hospital in Boston, developed a state-by-state population model to estimate how broader genetic testing will affect ALS clinic demand. The analysis focused on gene-related ALS driven by four common variants—SOD1, C9orf72, FUS, and TARDBP—and on asymptomatic relatives who carry these variants. The model assumed that each gene-positive relative would receive one annual checkup at a specialized ALS center.

To build the projections, the team combined ALS case data from an Atlanta study with 2023 U.S. Census Bureau population estimates and case numbers from a national registry. They estimated that, on average, 4.25 relatives test positive as gene carriers for every person with ALS. Using these inputs, the model quantified near-term and 10‑year trajectories for both gene-related ALS prevalence and follow-up needs among carriers.

For 2026, the model projects 2,704 people in the U.S. living with gene-related ALS and 10,944 gene carriers, with most states adding fewer than 50 annual visits per ALS center and none exceeding 100. By year 10, projections rise to 7,474 people with gene-related ALS and 26,111 carriers; only six states remain below 50 additional visits per center annually, while three states exceed 200. The proportion of states requiring 100 or more extra visits per center grows from 0% to 42% over the decade, corresponding to compound annual growth rates of approximately 12% for gene-related ALS and 10% for carriers. The study appears in Neurology Genetics on June 24, 2026.

The authors note that projections are model-based and intended for planning rather than exact counts. Assumptions include broad uptake of genetic testing among people with ALS and their at-risk relatives, which could overestimate visit volumes. Future work suggested in the release includes incorporating more granular data and evaluating whether telehealth and increased support for multidisciplinary ALS centers can meet emerging needs.

“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 Jennifer Morganroth, MD, of Massachusetts General Hospital in Boston and a member of the American Academy of Neurology.

“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,” said Morganroth.

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Massachusetts General Hospital in Boston