Comparison of Demographics: National Amyotrophic Lateral Sclerosis Registry and Clinical Trials Data

Affiliates Moon Han, Jaime Raymond, Theodore C. Larson, Paul Mehta & D. Kevin Horton


1. Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry, Office of Innovation and Analytics, National ALS Registry (CDC/ATSDR), Atlanta, GA, USA

Journal Journal of Racial and Ethnic Health Disparities
Summary This study from the National ALS Registry aims to compare the participant demographics between the Registry and the Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT). The primary objective of the study was to identify any potential demographic differences between patients being recruited for clinical trials in PRO-ACT compared to the Registry’s database, who are more likely to represent the epidemiological population of ALS patients. Common demographic characteristics were compared: age, sex, ethnicity, and race (when possible); alongside comparisons of ALS-symptom related variables: age of diagnosis, age of symptom onset, familial history of ALS, etc.

The study found that the median age of participants in the PRO-ACT database was younger than that of the Registry’s (57 vs 61). Race category differences were observed, but were not statistically significant. However a statistically significant portion of PRO-ACT recruits had missing or unknown race information compared to the Registry (31.9% vs 2.1%). Addressing the discrepancy of the demographic niche in the ALS population may increase the generalizability of study outcomes. Further efforts are needed to target understudied portions of the population.

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