Comparing Amyotrophic lateral sclerosis (ALS) patient characteristics from the National ALS Registry and the Massachusetts ALS Registry, data through 2015

Affiliate

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

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