When 38-year-old Maria Lopez learned her uncle had been diagnosed with ALS, she didn’t just grieve—she got tested. As one of an estimated 4.25 relatives per ALS patient who carry a genetic variant linked to the disease, she now visits a specialized ALS clinic annually, part of a quiet but accelerating wave reshaping the future of neurologic care in the U.S. According to a new study in Neurology Genetics, the rise of genetic testing for ALS is set to dramatically increase demand for specialized clinic visits over the next decade, as more at-risk individuals like Maria are identified before symptoms appear. With over 40 ALS-associated genes now known, and emerging gene-targeted therapies on the horizon, early detection is no longer just about awareness—it’s about intervention.
The study, led by Dr. Jennifer Morganroth of Massachusetts General Hospital, modeled the national impact of genetic testing for four of the most common ALS-causing variants: SOD1, C9orf72, FUS, and TARDBP. Using data from Atlanta’s ALS surveillance and 2023 U.S. Census estimates, researchers projected that by 2026, 2,704 Americans will have gene-linked ALS and 10,944 will be asymptomatic carriers requiring annual monitoring. But by year ten, those numbers jump to 7,474 diagnosed individuals and 26,111 carriers—each needing expert care. Today, most states require fewer than 50 additional clinic visits per ALS center each year. Within a decade, that changes drastically: 18 states will need 100 to 199 extra visits annually, and three will surpass 200. The proportion of states facing high demand—100 or more additional visits per center—will rise from 0% to 42%.
This isn’t just a logistical challenge; it’s a call to prepare. The compound annual growth rate for people with genetic ALS is projected at 12%, and 10% for carriers, outpacing the current capacity of many clinics. "Anticipating the clinical needs of people with a genetic risk for ALS... is essential for improving care and ensuring that clinics are ready as new therapies become available," Dr. Morganroth emphasizes. As gene therapies and preventive trials advance, the window to build capacity narrows. While the model assumes broad testing uptake—potentially overestimating demand—it also opens the door to solutions like expanded telehealth and increased federal support for multidisciplinary care centers.
For families touched by ALS, the message is clear: the future of care is shifting from reaction to prevention. And as more Americans learn their genetic risk, the clinics that serve them must grow not just in number, but in readiness. The wave is coming—what matters now is whether the system can rise to meet it.