ALS is a progressive, fatal neurodegenerative disorder. Early recognition is essential to ensure timely referral, facilitate enrollment in drug trials, and optimize symptom management; however, the average diagnostic delay is 12 months from symptom onset to confirmed diagnosis. This study aims to identify factors contributing to these delays in the Washington DC region and inform strategies for earlier recognition and treatment.

A prospective survey of patients enrolled in the George Washington University ALS Clinic is underway to characterize the diagnostic timeline from symptom onset to time of survey. Participants reported their demographic and clinical data, and self-rated their symptom progression. Diagnostic delays were compared across subgroups using independent-sample t-tests and nonparametric tests.

Currently, 30 patients have been enrolled (mean diagnostic delay: 18.28 months). Patients with self-characterized slow progression experienced longer delays compared to those with fast progression (p= 0.01). Females also experienced an average 10.9-month longer delay compared to males (p= 0.01). These factors were independent, with the same number of females across progression groups. Additionally, patients who first saw a neurologist experienced shorter delays than those who initially saw other providers (p= 0.02). No differences were observed regarding spinal vs bulbar onset, number of doctors seen, or rural-urban status. Patient enrollment is ongoing.