A German registry study found that 12% of people with ALS lived at least 10 years after symptoms began
Original source
Long-term survival in amyotrophic lateral sclerosis - data from a population-based registry in Rhineland-Palatinate, Germany. (opens in a new tab)Compass summarised this from the study's abstract.
Study details
- Studied in
- Human
- Trial registration
- NCT01955369
In a population-based registry of 200 people with amyotrophic lateral sclerosis (ALS) in Rhineland-Palatinate, Germany, median survival was 2.5 years from symptom onset and 1.5 years from diagnosis. Twelve percent lived for at least 10 years after symptoms began. Younger age, slower disease progression, no frontotemporal dementia and a longer time between symptom onset and diagnosis were associated with longer survival.
Why this matters
These findings show that long-term survival occurs for a meaningful minority of people with ALS. Early clinical information may help inform discussions about care and advance planning, but the study does not provide an individual prognosis or change treatment.
Limitations and context
This was an observational analysis from one regional registry involving 200 people, so the associations may not apply to every person with ALS. The identified factors were associated with survival, rather than proving that they caused longer survival.