Multi-registry Analysis of Patients with Multiple Sclerosis (MS) and Neuromyelitis Optica (NMO) to Improve Capture of Demographic Data and Compare Visual Outcomes
Heather Moss1, Lauren Wiener2, Caitlin Rizy2, Shrujal Baxi2, Manan Kocher2, Aracelis Torres2, Michael Mbagwu2
1Stanford University, 2Verana Health

To combine American Academy of Neurology Axon Registry® data and American Academy of Ophthalmology IRIS® Registry (Intelligent Research in Sight) data to reduce missingness of demographic information and characterize visual outcomes in patients with MS and NMO.

The Axon Registry provides real-world data for patients with MS and NMO. However, some data are incomplete (e.g. demographics) and some relevant outcomes are not systematically captured in neurology documentation (e.g. visual acuity [VA]). The IRIS Registry contains demographic and visual function data that may complement Axon Registry-derived data to enhance understanding of real-world outcomes.
In this cross-sectional study, participants were included if they had repeated ICD-9/10 codes for MS or NMO in the Axon Registry and overlapped temporally in both registries. Age, sex, race, ethnicity and US census region were extracted and classified as conflicting, missing, and not missing in the combined data set. The IRIS Registry contributed VA data.
Among 60,316 patients with MS and 1,068 patients with NMO in the Axon Registry, 14,085 and 252 had temporal overlap in the IRIS Registry. When we combined data for the MS cohort, there was a 9-18% absolute reduction in missing or conflicting data for race, ethnicity, and location (all p=<0.0005, McNemar), but not age (p=1.0, McNemar) or sex (p=0.08, McNemar). For patients in both registries, 10,907 with MS and 142 with NMO had VA data. VA was worse in patients with NMO (0.17 logMAR, 95%CI 0.12,0.21, p<0.0005, linear model with age, gender).
Using data from two registries reduced missing data for race, ethnicity and location and enabled examination of outcomes captured in the IRIS Registry for conditions that are diagnosed more frequently in the Axon Registry, demonstrating the utility of a multi-registry analysis.