2026 American Academy of Neurology Abstract Website

Objective:

This prospective study aims to identify clinical and demographic predictors of diagnostic delays in Amyotrophic Lateral Sclerosis (ALS).

Background:

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.

Design/Methods:

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.

Results:

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.

Conclusions:

This study identifies key predictors of diagnostic delay in ALS, including sex, self-rated progression, and initial provider type. No significant differences were observed based on geographical location or rural-urban status, which may reflect the greater accessibility to specialty care in the Washington DC region. Given the high mortality of ALS, early recognition remains critical to improving outcomes. These findings highlight the need for provider awareness and diagnostic tools that enable earlier intervention, improve survival, and quality of life.