Implementation of the National Amyotrophic Lateral Sclerosis (ALS) Registry

The uncertainty about the incidence and prevalence of Amyotrophic Lateral Sclerosis (ALS), as well as the lack of knowledge about the role of environmental exposures in the etiology of ALS, have created a need for structured data collection through a national ALS registry. In 2008, President Bush signed a law that provides for a national ALS registry to be created. Prior to this law being enacted, the Agency for Toxic Substances and Disease Registry (ATSDR) was already conducting four pilot projects (during 2006–2009) to determine the feasibility of creating a national ALS registry. Results from the pilot projects concluded that a national ALS registry is feasible; however, several different methodologies would be needed for identifying a large portion of individuals with ALS. Therefore, in 2009, ATSDR began implementation of the National ALS Registry using a two-pronged approach to help identify all US cases of ALS. The first approach, currently being undertaken, utilizes existing national administrative databases to identify prevalent cases. The second approach, which will be initiated in fall 2010, will use a secure web portal to identify cases missed by the national administrative databases. Also, to improve the completeness of the National ALS Registry, ATSDR is concurrently implementing registries that will allow for timely population-based case estimates of ALS in smaller defined geographic areas (i.e., at the state and metropolitan levels). The purpose of this session is to provide an overview of the development and implementation of the National ALS Registry.