ALS (amyotrophic lateral sclerosis) is a disease where nerve cells controlling voluntary movement gradually die. About 5,000 people are diagnosed with ALS in the US each year. Until recently, treatment focused on riluzole and edaravone, which modestly slow progression, plus extensive supportive care for breathing, swallowing, and mobility.
What's actually going on in research
Trials are testing drugs that target specific genetic mutations (like SOD1), approaches to reduce inflammation in the brain and spinal cord, antisense therapies that silence disease-causing genes, and combinations of existing drugs. Researchers are also studying stem cells, gene therapy, and ways to protect motor neurons from dying. Much attention is on catching the disease earlier and identifying biomarkers that predict progression.
Gene-targeted therapies
Tofersen targets the SOD1 mutation that causes about 2% of ALS cases, using antisense technology to reduce the toxic protein. Similar approaches are in testing for other genetic forms of ALS, including C9orf72 mutations.
Combination approaches
Trials are testing whether combining drugs with different mechanisms — like pairing riluzole with AMX0035 (sodium phenylbutyrate and taurursodiol) — slows decline more than single drugs. The goal is to attack the disease from multiple angles simultaneously.
Early detection
Studies are working to identify ALS before significant motor neuron loss occurs, when treatment might be most effective. This includes blood tests for neurofilament light chain and imaging techniques that detect early nerve damage.
What to know before you search
Eligibility typically depends on time since diagnosis (often within 18-24 months), breathing capacity measured by forced vital capacity, and for genetic trials, confirmed presence of a specific mutation.
What types of trials are currently open
- Treatment trials — Testing new drugs to slow disease progression, often comparing them to riluzole or placebo in people with recent ALS diagnosis.
- Gene therapy trials — Studies of therapies targeting specific genetic mutations, available only to people with that mutation confirmed by genetic testing.
- Stem cell trials — Testing whether stem cells injected into the spinal cord or given intravenously can protect motor neurons or replace damaged ones.
- Device and care trials — Studies of breathing support devices, communication tools, feeding methods, and physical therapy approaches.
- Observational studies — Following people with ALS over time to understand how the disease progresses and what factors affect survival and quality of life.
Recently added ALS trials
Complete imaging scans to help diagnose swallowing problems
This study will evaluate whether neuromuscular ultrasound and MRI can be used as imaging markers of bulbar involvement and swallowing dysfunction in individuals with inclusion body myositis (IBM). Researchers will compare imaging and clinical findings in participants with IBM with those in participants with other myopathies, ALS, PLS, and healthy volunteers. The study is a one-time visit. Study procedures may include neurological assessments, swallowing questionnaires, tongue strength testing, neuromuscular ultrasound, and MRI. The goal is to identify more sensitive and objective ways to assess bulbar dysfunction biomarkers.
Complete advanced brain imaging to help diagnose motor neuron disease
Motor Neuron Disease (MND) is a neurodegenerative disorder, which causes progressive loss of nerve cells controlling the muscles responsible for movement, speech, swallowing and breathing. MND is not actually a single disease, but a range of diseases; some more serious with patients dying within a year, and some less severe cases with a life expectancy of several years. It is often difficult and can take a long time to get a diagnosis of MND, by which time patients are often already very unwell. The aim of this research study is to improve the diagnosis of MND and make it faster. The investigators plan to achieve this goal by using advanced Magnetic Resonance Imaging (MRI) to develop new diagnostic tests for MND. The investigators will use a scanner with a very strong magnetic field of 7 tesla (7T), which provides images of the brain with increased detail compared to standard MRI scanners, which use magnetic field strengths of 1.5T or 3T. The investigators will use the advanced capability of 7T MRI to identify so-called imaging biomarkers, which are features of the scans that are specific to a particular disease, in this case MND and its different subtypes. This is a pilot study with a relatively small number of patients. The preliminary findings from this research will be used to design larger follow-on studies aiming to establish a fast and specific diagnosis for patients living with MND. This would allow patients to enter suitable trials faster and would help patients to receive more tailored treatment.
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