Summary Report: Amyotrophic Lateral Sclerosis and Multiple Sclerosis Surveillance Annual Meeting, February 26, 2008: Issues Related to Developing a National Surveillance System and Registries for Amyotrophic Lateral Sclerosis and Multiple Sclerosis

摘要

Dr. Muravov pointed out that throughout the years, ATSDR has funded various investigations to address community concerns regarding possible increases in autoimmune and immunological diseases. The major limitation of the types of investigations that have been conducted is a lack of baseline prevalence estimates, which makes it impossible to determine whether there is an increase of these diseases in the community. Given this, ATSDR funded several studies to determine the baseline prevalence for ALS and MS in several geographic areas. The completed studies resulted in useful prevalence data; however, the studies also showed that gaining access to neurologists records is a time-consuming and costly endeavor. In addition, not all neurologists would grant access to their records, creating the potential for bias. In March 2006, ATSDR convened a workshop to discuss the creation of a national surveillance system for selected neurological and autoimmune diseases. Discussion also included the identification of existing registries and databases, selecting disease(s) for surveillance, and developing and testing methodology.