National ALS Registry

Every person living with ALS in the United States can enroll in the National ALS Registry, a critical tool for advancing ALS research and improving patient care. The National ALS Registry is one of the largest ALS research projects ever created, designed to identify ALS cases from across the entire United States and collect valuable information about the disease.

The Registry plays a vital role in helping researchers understand what causes ALS, how it progresses, and how it can be treated or potentially prevented. By participating, patients provide essential data that contributes to scientific studies, clinical trials, and medical research aimed at improving ALS care and quality of life. The information collected is confidential and helps the ALS community develop strategies for better treatments and support services.

ALS United Mid-Atlantic has been proud to lead efforts to establish the National ALS Registry. Our team worked with Congress to pass the ALS Registry Act and helped secure federal funding to design, build, and implement the Registry at the Centers for Disease Control and Prevention (CDC) / Agency for Toxic Substances and Disease Registry (ATSDR).

Participation in the National ALS Registry is free, simple, and accessible to all patients with ALS in the United States. By joining, you are contributing to a nationwide effort to advance research, improve care, and support future treatments for ALS.

To learn more or enroll in the National ALS Registry, visit the CDC National ALS Registry website today and take an active role in shaping the future of ALS research.