Study area

ALS

ALS research is moving on several fronts at once, and many studies are designed so that people can take part from home for some of the visits.

About ALS

Amyotrophic lateral sclerosis, also called motor neuron disease, damages the nerve cells that control the muscles. Weakness usually starts in one place, such as a hand, a foot or the muscles used for speech and swallowing, and spreads over time. Thinking is often unaffected, though some people notice changes in behavior or language.

Studies test medicines meant to slow the disease, some of them written for people who carry a particular gene change. Others follow how ALS changes over time without testing a treatment, or look at breathing support, nutrition and devices that help people communicate.

A man in a wheelchair reading at home while a woman works in the kitchen behind him
Research in this area

Kinds of study you will come across

Most studies in this area fall into one of these groups. A listing usually says which one in its first lines.

01

Slowing the disease

Compare a study medicine with placebo, measuring strength, function and breathing over months.

02

Gene-targeted studies

Written for people with a known ALS gene change, found by a genetic test.

03

Natural history

Follow people over time, with no study medicine, to understand how ALS progresses.

04

Living with ALS

Research on breathing support, feeding, speech technology and care at home.

Be ready

Before your first call

What studies in this area often involve, and what a study team is likely to ask you for.

What visits tend to involve

  • A rating of everyday tasks such as walking, writing and swallowing
  • Breathing strength measured by blowing into a tube
  • Blood samples, and for some studies a sample of spinal fluid
  • Some visits done by video or by a nurse who comes to your home
  • A caregiver often joins, and may answer questions too

Have these to hand

  • When your symptoms started and when you were diagnosed
  • The results of any genetic test, if you have had one
  • The medicines you take for ALS and for anything else
  • Whether you use a breathing machine or a feeding tube
Your questions

Questions to ask the study team

Write them down before you call. A good team expects them, and the answers help you decide.

  • Can I keep taking the ALS medicines I already use?
  • How many visits are at the site, and how many from home?
  • Is there an open-label part after the study, where everyone gets the medicine?
  • What support is there for the person who comes with me?
Study areas

Other areas we explain

Updates on ALS research

Sign up with this area chosen for you. We write now and then about research in it, by email, and by text if you check the box.