EMBARGOED FOR RELEASE UNTIL 4 PM ET, June 24, 2026
Genetic testing projected to increase ALS clinic visits over next decade
Study predicts a substantial increase in need for specialized care
EMBARGOED FOR RELEASE UNTIL 4:00 P.M. ET, WEDNESDAY, JUNE 24, 2026
MINNEAPOLIS 鈥 The availability of genetic testing for
amyotrophic lateral sclerosis (ALS) for people with a family member diagnosed
with the disease is expected to greatly increase the number of clinic visits to
specialized ALS centers over the next decade, according to a study published
June 24, 2026, in , an official journal
of the .
ALS is a rare, progressive neurodegenerative disease that
affects nerve cells in the brain and the spinal cord. People living with ALS
lose the ability to initiate and control muscle movement, which often leads to
total paralysis and death within five years.
鈥淓merging genetic therapies along with the expansion of
genetic testing are identifying people carrying a genetic risk for ALS who may
benefit from early intervention,鈥 said study author Jennifer Morganroth, MD, of
Massachusetts General Hospital in Boston and a member of the American Academy
of Neurology. 鈥淥ver 40 ALS-associated genes have been identified. Our study estimated
the current number of people in the United States carrying four common ALS gene
variants as well as the number of relatives as potential gene carriers and
projected that the need for care at specialized ALS centers will greatly
increase over the next decade.鈥
For the study, researchers developed a population model to
estimate how many people in each state may have ALS caused by four common gene
variants, SOD1, C9orf72, FUS and TARDBP, as well as
the number of people related to them who carry these gene variants but do not
have symptoms. They looked at ALS data from a study in Atlanta, Georgia, and
compared it to population numbers in the 2023 U.S Census Bureau population
estimates. They also used ALS case numbers from a national registry.
They estimate for each person with ALS, there would be an
average of 4.25 relatives who test positive as gene carriers, and those
relatives would need one check-up per year at an ALS center.
Researchers projected, in 2026, that 2,704 people in the
U.S. will have a gene-related form of ALS and there would be 10,944 gene carriers.
Researchers found that for most states, fewer than 50 extra clinic visits were
needed annually per ALS center, with 12 states in the range of 50 to 99
additional clinic visits and no states surpassing 100.
By the tenth year, the demand for clinic visits increases
substantially. The model projects 7,474 people with a gene-related form of ALS
and 26,111 gene carriers. Only six states remain below 50 visits per ALS center
annually; 22 states have 50 to 99 visits; 18 states reach 100 to 199; and three
exceeded 200.
The proportion of states with 100 or more additional visits
per ALS center rises over the decade from 0% to 42%, while the percentage of states
with fewer than 50 additional visits per clinic falls from 74% to 12%. The
compound annual growth rate from year one to year 10 was approximately 12% for people
living with gene-related ALS and 10% for gene carriers.
鈥淎s more at-risk relatives get genetic testing, the testing
will identify more gene carriers, so specialized ALS centers must plan for the
long-term care of more people,鈥 said Morganroth. 鈥淎nticipating 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.鈥
A limitation of the study was that the predictions are based
on a model and are meant to help plan for the future, not to give exact
numbers. The model assumes broad genetic testing and follow-up among people living
with ALS and their at-risk relatives, which may overestimate the need for
clinic visits.
Morganroth noted that future studies should look at more
detailed data and whether telehealth in addition to increased funding for ALS
multidisciplinary care centers can support people who are ALS gene carriers.
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