Measuring Ambulatory Neurologic Health Disparities with the Axon Registry
Richard Benson1, Sarah Benish2, Gregory Esper3, Brett Kissela4, Nicole Rosendale5, Erika Marulanda-Londono6, Omotola Hope7, Tammy Pham8, Matthew Roe9, Aracelis Torres9, Amanda Lien9, Steven Kauwe9, Aristotle Mante10, Karen Lundgren10, Becky Schierman10, Lyell Jones11
1National Institute of Neurological Disorders and Stroke, 2University of Minnesota Physicians, 3Emory University, 4University of Cincinnati Hospital, 5ZSFG Neurology Service, 6University of Miami, 7University of Texas Health Science Center - Houston, 8Colorado Permanente Medical Group, Department of Neurology, 9Verana Health, 10American Academy of Neurology, 11Mayo Clinic

To examine potential racial and ethnic (R/E) disparities in ambulatory neurology quality measures within the American Academy of Neurology (AAN) Axon Registry.


R/E disparities in neurological morbidity and mortality have been clearly documented. Despite these findings, there have been no broad nationwide US examinations of disparities ambulatory neurologic care.



This was a retrospective non-randomized cohort study of patients in the AAN Axon Registry. Patients were included in the study if they contributed towards one of the selected quality measures for multiple sclerosis, epilepsy, Parkinson's disease or headache during the study period of January 1, 2019 to December 31, 2019. Descriptive analyses of patient demographics were performed and then stratified by race and ethnicity.


There was a total of 635,819 patients included in these analyses. Separate analyses were performed for race (64% White; 8% Black; 1% Asian; 27% unknown) and ethnicity (52% not Hispanic; 5% Hispanic; 43% unknown). Mean age ranged from 18 – 55 years with 39% female; 27% male; and 34% unknown. Quality measures were chosen based on completeness of R/E data and were either process or outcomes focused. The number of measures varied by disease (e.g. multiple sclerosis 1; epilepsy 1; Parkinson’s Disease 5; headache 4). Provider performance on quality measures ranged from 0 - 84%, with statistically significant differences by R/E after controlling for multiple testing.


The large number of missing or unknown R/E data and low overall rate of performance on quality measures made the relevance of these small differences difficult to determine. However, this analysis does demonstrate the feasibility of using the Axon Registry to assess neurological disparities in outpatient care. More education and training are required on the importance of and how to collect R/E data.