Long-term outcomes study in autoimmune encephalitis

Dr. Anusha Yekoshumar of the Icahn School of Medicine at Mount Sinai Hospital in New York City.

The Autoimmune Encephalitis Alliance is participating in a study to better understand the challenges AE survivors face during recovery and in the years following diagnosis. There is a survey designed for caregivers as well, which will provide useful information to researchers. We hear from many patients who are facing ongoing struggles to return to life as “normal” and caregivers desiring to help their loved ones recover. We hope this study will shed new light on the needs in this area and lead to advances in rehabilitation that will ultimately benefit patients and caregivers.

The idea for this research arose as it has become clear many patients are still struggling with various types of challenges several years later including fatigue, cognitive symptoms (such as memory and concentration), and emotional symptoms. These issues may be overlooked in a standard neurological exam. A study about the subject was published in late 2017. The abstract may be viewed here.

The current study is being conducted by Dr. Anusha Yekoshumar of the Icahn School of Medicine at Mount Sinai Hospital in New York City. Participants are also enrolled from the United Kingdom. The AE Alliance is very thankful for researchers who are working to improve the lives of patients and families and will continue to work alongside doctors with an interest in the field. The AE Alliance Medical Advisory Committee will review and approve any studies in which we are involved.