• D Kevin Horton, Shannon Graham, Reshma Punjani, Grete Wilt, Wendy Kaye, Kimberly Maginnis, Lauren Webb, Judy Richman, Richard Bedlack, Edward Tessaro, and Paul Mehta.
• a Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention , Atlanta , GA , USA.
• Amyotroph Lateral Scler Frontotemporal Degener. 2018 Feb 1; 19 (1-2): 126-133.

BackgroundAmyotrophic lateral sclerosis (ALS) is a fatal motor neuron disease that typically results in death within 2-5 years of initial symptom onset. Multidisciplinary ALS clinics (MDCs) have been established to provide specialty care to people living with the disease.ObjectiveTo estimate the proximity of ALS prevalence cases to the nearest MDC in the US to help evaluate one aspect of access to care.MethodsUsing 2013 prevalence data from the National ALS Registry, cases were geocoded by city using geographic information system (GIS) software, along with the locations of all MDCs in operation during 2013. Case-to-MDC proximity was calculated and analyzed by sex, race, and age group.ResultsDuring 2013, there were 72 MDCs in operation in 30 different states. A total of 15,633 ALS cases were geocoded and were distributed throughout all 50 states. Of these, 62.6% were male, 77.9% were white, and 76.2% were 50-79 years old. For overall case-to-MDC proximity, nearly half (44.9%) of all geocoded cases in the US lived >50 miles from an MDC, including approximately a quarter who lived >100 miles from an MDC. There was a statistically significant difference between distance to MDC by race and age group.ConclusionsThe high percentage of those living more than 50 miles from the nearest specialized clinic underscores one of the many challenges of ALS. Having better access to care, whether at MDCs or through other modalities, is likely key to increasing survivability and obtaining appropriate end-of-life treatment and support for people with ALS.

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