Implementation of a Statewide Tracking Method of Amyotrophic Lateral Sclerosis (ALS) Cases to Investigate Disease Patterns and Possible Environmental Associations

BACKGROUND: Community concerns relative to unusual spatial and temporal patterns in Amyotrophic Lateral Sclerosis (ALS) prevalence, along with a largely unknown disease etiology, led to the call for a statewide registry in Massachusetts. The Argeo Paul Cellucci ALS Registry of Massachusetts tracks all ALS cases across the state of Massachusetts. Data collection efforts, with limited staffing and analytical capability, began in 2007 following a legislative mandate to track ALS. An in-depth study of a possible cluster of Multiple Sclerosis (MS) and ALS in Southeastern Massachusetts and feasibility studies were also undertaken. Full funding for establishment of the statewide registry began in 2013. As mentioned, the causes of ALS are unknown; however several environmental hypotheses have been suggested such as exposure to metals or harmful algal blooms. The Massachusetts ALS registry and a national voluntary ALS registry are now collecting data to better understand the causes of ALS. This presentation will provide the rationale for an ALS registry, its methods, and implications for public health.   

METHODS: Retrospective case ascertainment is used to collect ALS patient’s records annually. Massachusetts Department of Public Health (MDPH) requests reports from clinics, neurologists, hospitals, and vital records. Cases are verified by contracted neurologists specializing in ALS. The Massachusetts registry receives case reports from individual clinics, neurologists, and medical record departments statewide, as mandated by state regulations. These data present opportunities for evaluating the spatial and temporal patterns of ALS. Utilization of the All Payers Claims Database (APCD) and a pilot real-time electronic health record database allow for the current collection methods to be compared to alternative means for disease surveillance.   

RESULTS: The Massachusetts ALS registry is the only comprehensive statewide system of reporting medically diagnosed cases of ALS in the United States. Difficulty in the diagnosis of ALS presents challenges for estimating disease prevalence and incidence, but systematic data collection and physician verification protocols enable consistent reporting. Annual incidence and prevalence is calculated by sex, age, county, and community. The estimated average annual prevalence from 2007-2009 is 4.2 per 100,000 in Massachusetts.  

CONCLUSIONS: The Massachusetts ALS Registry is the only state government mandated registry in the United States. It has established a baseline for surveillance of a disease that is not widely tracked, particularly in the United States. Data are available for epidemiologic studies and to ALS researchers to better understand the causes of ALS.