Comparing Amyotrophic lateral sclerosis (ALS) patient characteristics from the National ALS Registry and the Massachusetts ALS Registry, data through 2015
Affiliates | Jaime Raymond [1], Reshma Punjani [1], Theodore Larson [1], James D. Berry [2], D. Kevin Horton [1], & Paul Mehta [1]
[1] Office of Innovation and Analytics, Agency for Toxic Substances and Disease Registry, Centers for Disease Control and Prevention, Atlanta, GA, USA [2] Sean M Healey & AMG Center for ALS, Massachusetts General Hospital, Boston, MA, USA |
Journal | Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration |
Summary | This paper aims to compare cases of ALS patients and their characteristics between the National ALS Registry and a state level registry, Massachusetts ALS Registry, between the years 2011 and 2015. The comparison analysis revealed the major differences in obtaining data between the two registries; ALS being a reportable condition in MA allowed for data collection directly from healthcare professionals, while the National ALS Registry relied national administrative data (CMS, VHA, VBA) and a public web portal to obtain ALS data. Demographic data was largely similar between the two registries and the National ALS Registry was able to match over 2/3 of the cases to the MA Registry. |
Link to paper | Read the paper here! |