News & Stories
Addressing Inequities in ALS Healthcare: The Critical Need for Diversity in Research
ALS affects individuals across all backgrounds, yet representation in ALS research has long been skewed. Data reveals that approximately 95% of participants in previous ALS clinical trial studies were Caucasian, leaving other populations, particularly Black and Latino communities, significantly underrepresented. This lack of diversity in research critically impacts diagnosis, treatment, and outcomes for underserved groups. Ramita D. Karra, MD, a neurology resident at UCLA, offers a firsthand perspective on these disparities and shares insights into efforts that Target ALS and others are making to bridge the gap in ALS healthcare for diverse communities.
“An important barrier that we face in serving patients with ALS and other neurodegenerative diseases is the lack of racial and ethnic diversity in our research studies, which can limit the generalizability of our findings,” said Dr. Karra. “To advance equitable care, we must continuously work to understand and address disparities in data representation as well as clinical outcomes, and access to care. By improving our processes and driving innovation, we can work towards developing treatments that better serve a diverse patient population.”