Incidence of AE estimated by Mayo study

Autoimmune encephalitis experts at the Mayo Clinic published the first population-based study of AE in an effort to determine the incidence of the disease.

The researchers found that in the last decade approximately 1 in every 100,000 people develop AE each year. This translates into approximately 5,000 new AE cases in the US annually and 90,000 people around the world each year.

The paper also reports that approximately 14 per 100,000 people alive in the study area have had autoimmune encephalitis in their lifetime. Eoin Flanagan, MD shared with AE Alliance that this allows them to estimate that about 1 million people worldwide have autoimmune encephalitis. 

The research documented a three-fold increase in the incidence rate over two ten-year study periods. The rise in the diagnosis of AE was attributed to the growing awareness and knowledge about AE.  This research demonstrates the critical importance of groups like the AE Alliance to educate doctors, support research and connect patients so no one faces this disease alone.

Finally, the study concluded that its incidence is thought to be similar to that of infectious encephalitis. This has broad-reaching implications for the allocation of healthcare resources. Dr. Flanagan also mentioned, “This study shows that autoimmune encephalitis represents a significant proportion of encephalitis at a population level. It is important doctors and patients are aware of this so that autoimmune encephalitis is recognized quickly and patients can be placed on the appropriate immune lowering medications.” The abstract is available here.

Thanks to Eoin Flanagan and the whole Mayo team for undertaking and sharing this ground-breaking work .