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Research

Study Finds Increased Genetic Testing for ALS Could Strain Clinics in the Next Decade

Woman doctor specialist holding buccal cotton swab and test tube ready to collect DNA from the cells on the inside of a woman patient.
Dusan Petkovic/Shutterstock.com

A new study published June 24, 2026, in Neurology Genetics® suggests that expanding genetic testing for amyotrophic lateral sclerosis (ALS) could significantly increase the number of people who need care at specialized clinics in the coming years. ALS causes people to lose control of their muscles, which often leads to paralysis and death within five years.

More than 40 genes have been linked to ALS, and identifying carriers early may allow for closer monitoring and earlier treatment. Even if someone is not showing symptoms, they still will need regular checkups to watch for early signs of the disease.

To understand how genetic testing will affect health care clinics, researchers created a population model to estimate the number of people in the U.S. who currently have ALS-related gene variants and the number of relatives who may be carriers. They also used national data and population estimates to project how many people will be living with ALS in 10 years.

Researchers estimated that in 2026, about 2,700 people in the U.S. would have a gene-related form of ALS and about 11,000 gene carriers without symptoms. By 2035, the number of people with gene-related ALS could rise to over 7,400 and the number of symptom-free carriers may reach over 26,000.

Experts say this increase could strain ALS clinics, which are often already busy and facing funding challenges. The study shows the need to expand clinic capacity, improve access, and develop new care approaches such as telehealth.

As genetic testing and treatment options grow, more people will need long-term monitoring for ALS risk. Preparing now can help ensure that people with ALS-related gene variants receive timely care, support, and access to new therapies as they become available.

Key Takeaways

  • This study highlights that as doctors test more people with ALS and their family members for gene variants, more people—both with symptoms and without—will need ongoing care and monitoring.
  • In 2026, about 2,700 people are projected to have gene-related ALS and about 11,000 to be carriers without symptoms. By 2035, these numbers could rise to over 7,400 people with ALS and more than 26,000 carriers.
  • Because gene carriers often need regular checkups, experts say clinics may face increased strain and will need more capacity, better access, and new care options like telehealth.

Medically reviewed by Sarah Song, MD, MPH, FAAN