Racial Disparities in the Diagnosis and Prognosis of ALS Patients in the United States

Background Amyotrophic lateral sclerosis (ALS) is a progressive, fatal disease with largely unknown etiology.

This study compares racial differences in clinical characteristics of ALS patients enrolled in the National ALS Registry (Registry).

Methods Data from ALS patients who completed the Registry’s online clinical survey during 2013–2022 were analyzed to determine characteristics such as site of onset, associated symptoms, time of symptom onset to diagnosis, and pharmacological and non-pharmacological interventions for White, Black, and other race patients.

Results Surveys were completed by 4242 participants.

Findings revealed that Black ALS patients were more likely to be diagnosed at a younger age, to have arm or hand initial site of onset, and to experience pneumonia than were White ALS patients.

ALS patients of other races were more likely than White ALS patients to be diagnosed at a younger age and to experience twitching.

The mean interval between the first sign of weakness and an ALS diagnosis for Black patients was almost 24 months, statistically greater than that of White ( p  = 0.0374; 16 months) and other race patients ( p  = 0.0518; 15.8 months).

The mean interval between problems with speech until diagnosis was shorter for White patients (6.3 months) than for Black patients (17.7 months) and other race patients (14.8 months).

Conclusions and Relevance Registry data shows racial disparities still exist in the diagnosis and clinical characteristics of ALS patients.

Increased recruitment of non-White ALS patients and better characterization of symptom onset between races might aid clinicians in diagnosing ALS sooner, leading to earlier therapeutic interventions.