Related Experiment Video
Updated: Jun 30, 2026
12:35
Clinical Testing and Spinal Cord Removal in a Mouse Model for Amyotrophic Lateral Sclerosis (ALS)
Published on: March 17, 2012
Preparing Amyotrophic Lateral Sclerosis Clinics to Provide Longitudinal Care for Individuals Carrying ALS Risk
Jennifer Morganroth1,2, Julia Yasek2, Matthew Harms2
1Healey and AMG Center for ALS, Division of ALS and Motor Neuron Diseases, Massachusetts General Hospital, Boston; and.
Neurology. Genetics
|June 29, 2026
Summary
Genetic testing for amyotrophic lateral sclerosis (ALS) will increase patient numbers, requiring expanded clinic capacity within a decade. Proactive planning is crucial for managing the growing population of gene-positive individuals in ALS care.
Area of Science:
- Neurology
- Genetics
- Public Health
Background:
- Advancements in genetic therapies and testing identify individuals with amyotrophic lateral sclerosis (ALS) risk variants.
- Early intervention and surveillance are crucial for individuals carrying ALS risk variants.
- ALS clinics face increasing patient numbers and funding challenges.
Purpose of the Study:
- To estimate the number of individuals with ALS risk variants in the US.
- To project the clinical engagement needed to support this population.
- To inform care delivery optimization and readiness for new therapies.
Main Methods:
- A population model was developed to estimate symptomatic and asymptomatic gene carriers.
- ALS prevalence and incidence were calculated using two distinct approaches.
- Gene-positive cases were estimated using published variant frequencies for SOD1, C9orf72, FUS, and TARDBP.
Main Results:
- In year 1 (2026), 2,704 symptomatic and 10,944 asymptomatic gene carriers were projected.
- By year 10 (2035), projections reached 7,474 symptomatic and 26,111 asymptomatic carriers.
- Most states will require significant expansion of ALS clinic capacity within a decade.
Conclusions:
- Gene-targeted testing will substantially increase ALS clinic visits.
- Current infrastructure may initially accommodate the rise, but expansion is needed within ten years.
- Proactive planning is essential for integrating gene-positive individuals into ALS care.
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