A spatial analysis of amyotrophic lateral sclerosis (ALS) cases in the United States and their proximity to multidisciplinary ALS clinics, 2013

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Affiliates D. Kevin Horton [1], Shannon Graham [1], Reshma Punjani [1], Grete Wilt [1], Wendy Kaye [2], Kimberly Maginnis [3], Lauren Webb [4], Judy Richman [5], Richard Bedlack [6], Edward Tessaro [7], Paul Mehta [1]

 

[1] Agency for Toxic Substances and Disease Registry, Division of Toxicology and Human Health Services
[2] McKing Consulting Corporation
[3] The ALS Association
[4] Muscular Dystrophy Association
[5] Les Turner ALS Foundation
[6] Duke University ALS Clinic
[7] PALS representative
Journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Summary This study sought to estimate the proximity of PALS to the nearest multidisciplinary ALS clinic (MDC) in the US. Using 2013 prevalence data from the National ALS Registry and locations of all MDCs in operation during 2013, the ability of PALS to access MDC was analyzed. 15,633 ALS cases were geocoded and distributed throughout all 50 states. Almost half of all geocoded cases in the US lived more than 50 miles from the nearest MCD. This highlights the need for better access in order to increase survival time and quality of life for PALS.
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Page last reviewed: July 14, 2021
Content source: Agency for Toxic Substances and Disease Registry