Benefit: Making choices about ALS symptom management, clinical trials, and other research studies

Based on your genetic testing results, your doctor may be able to recommend different ways to manage your ALS symptoms. You may qualify to participate in a clinical trial based on your results, too.

Clinical trials are research studies where researchers test new treatment options to make sure they’re safe and effective. Many clinical trials related to ALS only accept people who have certain genetic testing results. That’s because the researchers are studying pathogenic variants (differences in certain genes that may cause people to develop ALS).

During a clinical trial, you may get new medicine that hasn’t been approved by the U.S. Food and Drug Administration (FDA) yet. But there’s no guarantee that the medicine will improve your ALS symptoms. No matter what the outcome, by participating in a clinical trial, you’ll help researchers learn more about genetic causes of ALS — and that can help people living with ALS in the future.

If you find out that you qualify for a clinical trial, you get to decide whether or not to participate in the trial. If you have questions about what to expect during a clinical trial, talk to your doctor.

Based on your test results, you may be able to participate in other types of research studies, like observational and natural history studies. In observational studies, researchers learn about ALS by observing or monitoring people living with ALS. In natural history studies, researchers follow a group of people with ALS over time. You won’t receive any treatment or medicine during these types of studies, but you’ll help researchers learn more about ALS.