Clinical characteristics of a large cohort of US participants enrolled in the National Amyotrophic Lateral Sclerosis (ALS) Registry, 2010–2015

Affiliates Jaime Raymond [1], Björn Oskarsson [2], Paul Mehta [1], & Kevin Horton [1]


[1] Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention
[2] Mayo Clinic

Journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Summary This study sought to describe the clinical characteristics of a large cohort of ALS participants enrolled in the Registry. Of the 1758 participants who completed the survey, the majority were white males between the ages of 50–69 years old. Approximately, 72.0% reported initial limb weakness onset of disease, followed by bulbar (22.1%), and trunk/global onset (6.1%). The median time between the onset of initial symptoms and an ALS diagnosis was 12 months. Treatment with Riluzole (48.3% currently using), wheelchairs/scooters (32.8%), and noninvasive breathing equipment (30.0%) were the most reported interventions. This is an important contribution to our understanding of the diversity in ALS clinical manifestations.
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