Progress — 36%
Observational studies
Observational studies are a key type of ALS clinical research that allows researchers to gather real-world information about the disease. During an observational study, researchers follow a group of people living with ALS to learn more about their disease and how it progresses over time. This means they collect information about volunteers’ health and their experiences with ALS.
In this type of study, people living with ALS may:
- Fill out surveys
- Provide samples of their blood, urine, or spinal fluid
- Submit recordings of their voices
- Allow researchers to collect information about their activity — like how many steps they take each day or how much they use their arms
- Get an imaging test done of their brain
Researchers then analyze the information to find trends in people living with ALS and discover new treatment targets. For example, researchers may study how participants’ voices change over time to learn about how ALS can affect people’s ability to communicate.
Observational studies may be done remotely — through online surveys or technology, like smartphones or smartwatches that participants wear. For some people living with ALS, this can make observational studies easier to participate in than other types of clinical research.
