Once you’ve been diagnosed with ALS, it’s easy to feel like you just don’t have many options, but by participating in clinical trials, people with ALS can receive cutting-edge therapy, information on the latest research, and improved quality of life while also helping to pave the way for new treatments, and eventually, a cure.
Why Participate in Clinical Trials?
When you participate in a clinical trial, you can receive the latest in experimental ALS treatments, which could potentially benefit you as a patient, as well as providing valuable insights for the researchers that are studying this disease. There are few treatments that are shown to slow the progression of this disease, but clinical trials have shown significant progress in helping us understand the causes of ALS, and how to better treat it.
Not every clinical trial will work for every patient, but it’s likely that many patients will qualify for at least a few trials. These trials study a variety of factors, like potential drugs for the treatment of ALS symptoms, stem cell therapies, and genetic influence on the disease. Your participation in a clinical trial could ultimately lead to new treatments, or even a cure, for other people living with ALS.
National ALS Registry
The Centers for Disease Control (CDC) created a program called the National ALS Registry to track ALS patients. The National ALS Registry is the largest ALS research project ever created, and is the only population-based registry in the U.S. that provides crucial information to scientists about this disease.
When you sign up for the National ALS Registry, you will be asked to complete surveys on a variety of topics, from the progression of your disease to its potential risk factors. The National Registry will use that information to help advance ALS research, but they will also contact you when you qualify for an available clinical trial.