Overview
- The study published June 24, 2026, used national registry data, an Atlanta cohort, and 2023 U.S. Census figures to model burden from four common ALS genes: SOD1, C9orf72, FUS and TARDBP.
- Researchers estimate 2,704 people with gene-related ALS and 10,944 asymptomatic gene carriers in 2026 and project growth to 7,474 cases and 26,111 carriers by year ten under broad testing uptake assumptions.
- State-by-state projections show steep increases in additional annual clinic visits per ALS center, with only six states remaining under 50 extra visits by year ten and three states exceeding 200 extra visits.
- The model assumes wide cascade genetic testing of relatives and yearly surveillance visits, so authors warn the projections could overestimate demand if testing or follow-up is less common in practice.
- Authors say clinics should expand multidisciplinary care, genetic counseling and telehealth and prepare for gene-targeted therapies and preventive trials to support more people identified before symptoms.