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Amyotrophic lateral sclerosis · public research digest
ALS Research Watch
Amyotrophic lateral sclerosis (ALS), also called motor neuron disease (MND), damages the nerve cells that control muscles. This site summarises published research in plain language, with every finding linked to its source and labelled by the strength of its evidence.
ALS progresses at very different speeds, which makes trials hard to read. Two ways of accounting for this are a clinical risk score built from symptoms and history (the TRICALS score) and a protein measured in spinal fluid that rises with nerve damage (phosphorylated neurofilament heavy chain, pNfH).
Source: Al Khleifat A, Malaspina A, Kirby J, et al. Journal of Neurology, 2026.
People whose ALS starts in the upper arms, including the flail-arm pattern, have often been reported to live longer than average. This Italian register study asked why.
Source: Calvo A, Moglia C, Callegaro S, et al. Journal of Neurology, 2026.
In 2018 the neurology department of the Medical University of Vienna opened a dedicated ALS outpatient clinic. This study compared 242 people treated before and after that change.
Source: Keritam O, Bormann D, Haimberger F, et al. Neurological Research and Practice, 2026.
The Gold Coast criteria, proposed in 2020, simplified how neurologists confirm an ALS diagnosis. This analysis pooled the individual records of 3,007 people from five international studies to compare them with the older revised El Escorial and Awaji criteria.
Source: Shrestha N, Munn Z, Calma A, et al. Journal of Neurology, 2026.
The GENFI consortium followed 278 people with frontotemporal dementia (FTD) caused by a change in one of three genes: C9orf72, GRN or MAPT. The C9orf72 repeat expansion is also the most common known genetic cause of ALS, and 31 participants had both FTD and ALS.
Source: Bouzigues A, Grassi M, Cantoni V, et al.; GENFI consortium The Lancet Neurology, 2026.
The C9orf72 expansion produces two possibly harmful things: repeat RNA, and short repeat proteins (dipeptide repeat proteins) made from that RNA. Researchers have long asked which of the two drives the disease.
MIROCALS tested whether low doses of interleukin-2, a drug that boosts regulatory immune cells, could improve survival when added to riluzole. 220 people were randomly assigned to the drug or a placebo for 18 months.
Source: Bensimon G, Leigh PN, Tree T, et al.; MIROCALS Study Group The Lancet, 2025.
