Benefit: Participating in clinical research

Some clinical research studies only accept people who have certain genetic testing results. That’s because the researchers are studying differences in certain genes that may cause people to develop ALS and related conditions. Based on your genetic testing results, you may qualify to participate in a clinical trial or an observational study, now or in the future.

Clinical trials, also known as interventional trials, help researchers identify information about investigational products: study drugs, special diets, or medical devices. All products being tested in clinical trials are considered experimental. That means it is not known if, or how, these products could potentially impact your health.

During a clinical trial, you may take new medicine that hasn’t yet been approved by the U.S. Food and Drug Administration (FDA). By participating in a trial, you can help researchers find out if these new medicines may prevent or delay the onset of symptoms of ALS and related conditions.

Observational studies are experiments where researchers study people by watching and learning from them over time without any interventions. In an observational study, volunteers may fill out surveys, provide samples of their blood or spinal fluid, or get an imaging test done of their brain. These studies are used to identify trends in people with certain genetic differences and discover new possibilities for clinical trials.

By participating in any type of clinical research study, 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 study, you get to decide whether or not to participate. Before joining any study, it’s a good idea to talk to your doctor, your genetic counselor, or the research team about the benefits and risks of participating in the study.