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Abstract Details

Examining National Representativeness of the Axon Registry
Practice, Policy, and Ethics
P17 - Poster Session 17 (11:45 AM-12:45 PM)
1-003

To determine external generalizability of the Axon Registry by comparison to two nationally representative, publicly available data sources, the National Ambulatory Medical Care Survey (NAMCS) and Medical Expenditure Panel Survey (MEPS).

The Axon Registry is AAN’s neurology-focused qualified clinical data registry that reports and analyzes electronic health record data from participating U.S. neurology providers.  It supports quality improvement within ambulatory neurology practices and promotes evidence-based clinical neurology. 

This is a cross-sectional, retrospective comparison of three national datasets: NAMCS (2012-2016), MEPS (2013-2017, 2019), and Axon Registry (2019).  We extracted patient demographics (age, gender, race, ethnicity), geographic location, neurological conditions (ICD codes grouped into eight clinical classifications for headache, epilepsy, cerebrovascular disease, multiple sclerosis, parkinsonism, dementia, spinal pain, and polyneuropathy), and healthcare utilization (neurology visits, MRI/CT neuroimaging studies and EEG/EMG neurophysiological studies).  

We performed descriptive analyses for pooled five-year data from the two public datasets compared to the Axon Registry.  We conducted Wald tests to evaluate the null hypothesis that comparable variables in Axon Registry and MEPS in 2019 were not different (alpha=0.05).
The Axon Registry recorded 645K people with 1.3M annual neurology visits (NAMCS, 14M weighted visits; MEPS, 9M weighted persons).  Compared to the pooled national surveys, Axon Registry has similar patient demographics, location, and neurological condition prevalence, and higher utilization of neuroimaging and neurophysiological studies.  Compared to MEPS 2019, Axon Registry represents a smaller proportion of children (6% vs. 9%, p=0.02), Asian, Pacific Islander, and indigenous persons (5% vs. 8%, p=0.001) and persons with epilepsy (10% vs. 13%, p=0.04), but more persons with dementia (8% vs. 6%, p=0.01), cerebrovascular disease (11% vs 8%, p<0.001), and persons in the Midwest (25% vs. 20%, p<0.001).
The Axon Registry demonstrates high concordance with two nationally representative surveys, with implications for further recruitment of neurology practices into Axon and generalizability of Axon Registry data.   
Authors/Disclosures
Andrew M. Wilson, MD, MS, MBA (Greater Los Angeles VA Health System)
PRESENTER
The institution of Dr. Wilson has received research support from AHRQ-PCORI. The institution of Dr. Wilson has received research support from CDC. Dr. Wilson has received personal compensation in the range of $500-$4,999 for serving as a Speaker with 好色先生.
Kavita Nair, PhD, FAAN (University of Colorado) Dr. Nair has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Bristol Meyers Squibb. Dr. Nair has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Novartis. Dr. Nair has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for PhRMA Foundation. Dr. Nair has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Genentech. Dr. Nair has received personal compensation in the range of $500-$4,999 for serving as a Consultant for TG Therapeutics. Dr. Nair has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for MJH Lifesciences. Dr. Nair has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Sanofi. Dr. Nair has received personal compensation in the range of $500-$4,999 for serving as a Consultant for EMD Serono. Dr. Nair has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Amgen. Dr. Nair has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Anylam . Dr. Nair has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Applied Patient Experience. Dr. Nair has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Esai. Dr. Nair has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for MHJ Life Sciences. Dr. Nair has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Sanofi-Genzyme. Dr. Nair has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Amgen. Dr. Nair has received personal compensation in the range of $500-$4,999 for serving as an officer or member of the Board of Directors for ICER. The institution of Dr. Nair has received research support from Genentech. The institution of Dr. Nair has received research support from Novartis. The institution of Dr. Nair has received research support from Genentech. The institution of Dr. Nair has received research support from Phrma Foundation. The institution of Dr. Nair has received research support from Bristol Meyers Squibb. The institution of Dr. Nair has received research support from Novartis. The institution of Dr. Nair has received research support from NINDS. The institution of Dr. Nair has received research support from Sanofi Genzyme. The institution of Dr. Nair has received research support from Kyverna Therapeutcis. Dr. Nair has a non-compensated relationship as a Board Member with Center for Improving Value in Healthcare that is relevant to AAN interests or activities.
Sarah M. Benish, MD, FAAN (University of Minnesota) Dr. Benish has received personal compensation in the range of $500-$4,999 for serving as a Conference Speaker with Optum Health 好色先生.
Gregory J. Esper, MD, MBA, FAAN (Emory University) Dr. Esper has or had stock in NeuroOne Medical Technologies, Inc.Dr. Esper has or had stock in Focused Cryo, Inc. The institution of an immediate family member of Dr. Esper has received research support from Centers for Disease Control. The institution of Dr. Esper has received research support from Health and Human Services Assistant Secretary for Preparedness and Response. An immediate family member of Dr. Esper has received publishing royalties from a publication relating to health care.
Amanda Lien (Verana Health) No disclosure on file
Aristotle Mante (好色先生) Aristotle Mante has nothing to disclose.
Karen Lundgren (好色先生) Ms. Lundgren has nothing to disclose.
Becky Schierman (好色先生) Ms. Schierman has nothing to disclose.
John Ney, MD, MPH, FAAN (VA Connecticut) Dr. Ney has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Ceribell. Dr. Ney has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Neurology Clinical Practice.