Category: Challenges of ALS

CHALLENGES OF ALS

Posted on July 28, 2017 by - Challenges of ALS

Epidemiology
 

ALS Prevalence: The Most Common
Adult-Onset Motor Neuron Disorder2

ALS incidence and prevalence in the United States
For every 100,000 people in the US, 1.44 are diagnosed with ALS each year. In 2025, the prevalence of ALS in the US is approximately 34,000.3
how often ALS is diagnosed
On average, a new case of ALS is diagnosed every 90 minutes.4
The relatively low prevalence is potentially understated due to the rapid progression of ALS.1

ALS Risk Factors Among US Population5

  • Men develop ALS more frequently than women (1.21:1)
  • White, non-Hispanics are the majority of diagnoses (86%)
  • Familial ALS (a hereditary form) occurs in about 10% of cases4
  • Several additional risk factors for ALS have been hypothesized, including heavy metal exposure, pesticides, and a history of military service
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Survival Rates
 

ALS Prognosis: ALS Is Incurable and Can Progress Rapidly6

  • The average survival time for people with ALS is 3 years
  • 20% of people with ALS live five years
  • 10% survive
    10 years
  • 5% live 20 years
    or longer
  • Rates of disease progression among ALS patients vary
The variable rate of ALS progression makes disease prognosis difficult.7
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Clinical Challenges
 

ALS Continues to Pose Numerous Clinical Challenges1

Disease Rarity: ALS is a rare and rapidly progressive motor neuron disease, and, even in multicenter trials, patient enrollment can be slow. Recruitment remains an obstacle for all clinical trials.

Disease Heterogeneity: The rate of progression of ALS varies widely among patients. Some patients die within one year; others live more than a decade.

Lack of Biomarkers: To date, there remains a lack of reliable biomarkers that are exclusive to ALS for predicting disease progression and prognosis.

Numerous Outcome Measures: A multitude of outcome measures are used to provide evidence of clinically meaningful change in ALS clinical trials, such as survival time and functional status. Each of these measures has its strengths, but none are perfect. See 4 of the most common outcome measures here.
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NEXT: RETHINKING ALS
 
References: 1. Berry JD, Cudkowicz ME. New considerations in the design of clinical trials for amyotrophic lateral sclerosis. Clin Investig (Lond). 2011;1(10):1375-1389. 2. Motor Neurone Disease Association. What is MND? Accessed October 14, 2025. https://www.mndassociation.org/about-mnd/what-is-mnd/basic-facts-about-mnd/ 3. Centers for Disease Control and Prevention. National ALS registry dashboard. Accessed October 23, 2025. https://www.cdc.gov/als/dashboard/index.html 4. ALS United Rocky Mountain. Who gets ALS? Accessed October 14, 2025. https://alsrockymountain.org/understanding-als/who-gets-als/ 5. Mehta P, Raymond J, Zhang Y, et al. Prevalence of amyotrophic lateral sclerosis in the United States, 2018. Amyotroph Lateral Scler Frontotemporal Degener. 2023;24(7-8):702-708. 6. ALS Association. Stages of ALS. Accessed October 24, 2025. https://www.als.org/understanding-als/stages 7. Simon NG, Turner MR, Vucic S, et al. Quantifying disease progression in amyotrophic lateral sclerosis. Ann Neurol. 2014;76(5):643-657.