Over the past 2 decades, in the US, the average time to ALS diagnosis has remained steady at 12 months, and is followed by a median survival of 18 months. These delays can result in missed or delayed opportunities for optimal care and research. ALS patients see 3-4 clinicians prior to referral to an ALS specialist for diagnosis confirmation and/or treatment initiation. There is an urgent need to identify where delays occur, so that targeted clinician awareness may be raised about benefits of early referral to multidisciplinary ALS centers.

During CY2011-2021, 78,520 Medicare beneficiaries were diagnosed with ALS (T0) while enrolled in the program. The mean(median) delay between first general neurologist ambulatory visit and T0, is 16.5(11.0) months. During 12 months preceding T0, an ALS patient undergoes median(max) 1.5(4.0) brain-MRIs, 1.6(6.0) spine-MRIs, and 1.3(4.0) electromyography studies.  >75% of CTCEs consistently report < 4 week wait times for new ALS patient consults. A “thinkALS” tool was developed as an easy-to-use clinical diagnostic and referral guide by iterative process and vetted by ALS experts and is being widely disseminated for routine use by non-ALS neurologists.