National Amyotrophic Lateral Sclerosis (ALS) Registry and Biorepository

ALS Registry and Biorepository

As ALS is a non-notifiable disease (a disease that does not have to be reported to public health authorities), the congressionally mandated National ALS Registry uses a novel approach to collect and analyze data about people living with ALS in the United States. The Registry includes data from existing national databases (for example, Center for Medicare and Medicaid Services, Veteran's Administration) and information provided by people with ALS who choose to participate via an online portal.

The Registry team has strengthened its collaborations and partnerships with institutions by helping recruit patients for dozens of clinical trials and epidemiologic studies. The team has connected thousands of patients directly to ALS research being conducted all around the United States. These studies range from Phase 2 and Phase 3 clinical trials for pharmaceutical companies to self-administered surveys on how patients adapt and cope with their diagnosis.

Part of the Registry's mission is to invest in and amplify the efforts of its academic partners. In 2020, researchers at Harvard University were funded to measure the levels of persistent organic pollutants in blood samples of people with ALS, as well as conduct serological profiling of the human virome (the collection of all viruses found in or on humans, including bacterial and eukaryotic viruses) and ALS risk in a military population. To date, the Registry has funded 19 academic institutions. In addition, the Registry collaborated with Dartmouth College to co-author publications discussing the risk of mercury exposures and examining risk factors such as electrical burns and head trauma for ALS patients.

To ensure patient and caregiver safety during the COVID-19 pandemic, ATSDR's National ALS Registry temporarily suspended some of its research activities. Specifically, the National ALS Biorepository paused all in-home blood and saliva collections. However, the Biorepository was able to continue post-mortem collections and distribute previously collected samples to researchers nationwide. There are nearly 17,000 participants in the Registry diagnosed with the disease, and professionals have collected samples from more than 1,500 ALS patients and funded 19 research grants. In 2021, the National ALS Biorepository will collaborate with the Johns Hopkins University's Postmortem ALS Tissue Repository to advance research on genetics and biomarkers.