Together, we will CURE ALS!
What's a clinical trial?
The ALS Association explains what a clinical trial is, what to expect, and how to find them. Learn about clinical trials here. What's an observational study?
Observational studies help answer questions about ALS based on "real-world evidence.” The researchers don’t intervene to try to change outcomes like disease progression or survival Instead, over time, they collect information and make observations about people’s ALS journey, health and the care they receive. This information is used to investigate genetic causes of ALS, potential biomarkers, and the role of environmental factors in ALS development. Learn more from The ALS Association about observational studies here. |
The National ALS Registry
The National ALS Registry is a program supported by the United States CDC (Centers for Disease Control and Prevention) to collect, manage, and analyze data about persons with ALS (PALS). It includes data from existing national databases and information provided by persons with ALS who choose to participate. Researchers can use Registry data to look for disease pattern changes over time and try to identify whether there are common risk factors among PALS. Additionally, the Registry provides updated links for participant resources like ALS clinical trials. To sign up for the National ALS Registry and learn more about the registry and much more about ALS, click here. |
Organize a fundraiser or sign up to participate in one! CLICK HERE FOR IDEAS!
Keep Up with the Latest in ALS Research
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ALS Therapy Development Institute - ALS Research Collaborative (ARC): As a partner in the ARC at-home study, you will be invited to contribute data about your medical history, lifestyle, and/or disease progression. The more data that that ALS-TDI has, the more they can learn about why ALS impacts people so differently, and how to effectively treat it. Unlike many other studies, the de-identified data that is contributed through ARC is shared with researchers around the world – so your data can help to advance the global effort to find effective treatments for ALS.