National ALS Registry Connects Researchers with Patients and Funding

National ALS Registry Connects Researchers with Patients and Funding

The National Amyotrophic Lateral Sclerosis (ALS) Registry is the only federal registry in the United States that collects information from ALS patients to help scientists learn more about this disease. Since launching the Registry in 2010, ATSDR has advanced ALS research by

• identifying approximately 17,000 patients living with ALS;
• connecting more than 1,000 patients with researchers conducting national clinical trials and epidemiological studies;
• gathering risk factor data from Registry enrollees, such as occupational history, military history, residential history, and history of traumatic brain injury (TBI);
• collecting and distributing tissue, hair, nails, blood, and other biospecimens from more than 1,500 donors through the National ALS Biorepository; and
• funding research on potential ALS risk factors, protective factors, and causes.

To date, the Registry has funded 17 academic studies of ALS in the areas of genetics, biomarkers, and disease progression. The following summaries provide a snapshot of how the Registry is working with researchers from across the country to find answers to ALS, also known as Lou Gehrig's Disease.

Dartmouth College

Researchers are trying to isolate any genetic predispositions to ALS or periods of life when someone is more susceptible to ALS. They are also using patient residential histories to estimate if and when patients could have been exposed to toxic bacteria, pesticides, pollution, or other environmental stressors.

Stanford University

Little is known about how chronic medical conditions and drugs may make people more susceptible to ALS. Investigators studied the role of autoimmune diseases, as well as the drugs used to treat those disorders, as both risk and prognostic factors for ALS.

University of Michigan

Persistent organic pollutants (POPs) are a group of toxic chemicals that don't break down easily in the environment. Measurable amounts of POPs are found everywhere in the world in food, water, air, and consumer products. This study is using plasma and central nervous system tissues to determine how POP exposures correspond with ALS progression.

Columbia University

This research study is the first to evaluate whether cell particles released from the central nervous system can potentially serve as novel biomarkers of environmental exposures and disease progression in ALS. Investigators will test biospecimens from ALS patients for metals and pesticides while matching exposure and patient-specific RNA to ALS signaling pathways.

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