Survival and epidemiology of amyotrophic lateral sclerosis (ALS) cases in the Chicago and Detroit metropolitan cohort: incident cases 2009–2011 and survival through 2018

Affiliates Reshma Punjani [1], Theodore C. Larson [1], Laurie Wagner [2], Bryn Davis [1], D. Kevin Horton [1], Wendy Kaye [2]


[1] Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention, Atlanta, GA, USA
[2] McKing Consulting Corporation, Atlanta, GA, USA

Journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Summary This paper describes the study undertaken by the National ALS Registry to describe the demographics, incidence, and survival of PALS in the Chicago and Detroit areas between 2009-2011. Neurologists in the two metro areas provided case reports for eligible ALS case and were submitted to the National Death Index through 2018 to obtain survival data. The team found that female PALS, nonwhite PALS, and PALS that had longer time between symptom onset and diagnosis experienced longer survival. The team indicates that further investigation is needed to better understand demographic differences in survival experience to aid in the disease management and prognosis of ALS.
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