Presented by Keo Pangan
Masters Candidate in Biostatisics
Plan B Adviser: Dr. Mark Fiecas
Racial disparities in the implementation of interventions and survival have been observed in patients with Amyotrophic Lateral Sclerosis (ALS). However, racial disparities in ALS progression have not been investigated.
Data in this study is from the ALS Natural History Consortium (n = 2046):
- n = 1902 White
- n = 116 Black
- n = 28 Asian
First, disparities in clinical outcomes between White, Black, and Asian patients were quantified, including:
- Median baseline Revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) score
- Survival time
- Kaplan-Meier curves
- Diagnostic delay
The ALSFRS-R score was observed longitudinally every 3–6 months, and its trajectory serves as a useful measure for ALS progression.
The ALSFRS-R trajectories were reconstructed using Sparse Multivariate Functional Principal Components Analysis (MFPCA). Permutation tests at pre-specified landmark times were used to evaluate differences in trajectories across the three racial groups.
Results from the analyses provided evidence of racial disparities between all races in the clinical outcomes.
For ALS progression:
- Black and White patients had different trajectories of ALS progression up to five years.
- Asian and Black patients differed in their trajectories only up to the first year.
- There was no significant difference between Asian and White patients in their trajectories.
Future research and initiatives should consider these disparities when designing clinical trials or interventions.


