ALS Surveillance in Massachusetts: A one-of-a-kind registry for tracking an elusive disease

Background: Amyotrophic Lateral Sclerosis (ALS) is a progressive and fatal neuromuscular disease with an etiology not yet fully understood. The Massachusetts Argeo Paul Cellucci ALS Registry is a unique population-based surveillance system used to monitor the occurrence of ALS throughout the state and to explore possible environmental causes of the disease. Methods: The Registry gathers annual reports of ALS cases from physicians, hospitals, and clinics in accordance with state regulations. Medical records are obtained and abstracted for each case, and eligible cases are reviewed by a consulting neurologist to confirm diagnosis. Necessary clinical and demographic information are recorded in a database and used by the Massachusetts Department of Public Health (MDPH) to prepare reports containing community-specific and statewide prevalence and incidence estimates. The data are also used to investigate spatial and temporal patterns and constitute a rich resource for researchers to explore environmental risk factors and whether they may impact disease rates. Results and Conclusion: The result is a first-in-the-nation registry that allows for complete ascertainment of all reported cases. From 2007-2011, 826 new ALS cases were reported to MDPH. The age-adjusted incidence rate was 2.2 people per 100,000 per year, and the age-adjusted prevalence rate was 5.6 per 100,000 per year - both comparable to the range of estimates reported in scientific literature. MDPH evaluated ALS occurrence similarly by community and other variables like age and family history. Data are available to inform patient service needs and epidemiologic studies. Researchers can apply for access with the MDPH\u27s IRB