Primary Menu

Education, Events, Publication

Funding & Recognition

Long-term Unmet Needs in the Recovering Autoimmune Encephalitis Community

Semester: Summer 2023

Presentation description

Autoimmune encephalitis (AE) is a condition characterized by brain inflammation resulting from an immune response against self-antigens in the central nervous system. AE can be differentiated into antibody-mediated, seronegative, and other related disorders. Although ongoing clinical trials focus on optimizing immunotherapy, there is a dearth of research on the long-term unmet needs and self-reported outcomes. The overarching goal of this study is to investigate the impact of social determinants of health (SDOH) on patient-reported outcome measures (PROMs) in both AE patients and their caregivers during the recovery phase. The aim is to investigate the long-term unmet needs and outcomes of AE patients and their caregivers to inform the development of targeted interventions. We hypothesize that patients with fewer long-term unmet needs will exhibit better recovery. This is a prospective study with 100 recovered AE patients aged eight years and above, along with adult caregivers. The SDOH survey will gather information about race, ethnicity, socioeconomic status, education, and geographic regions. We will use PROMs to determine long-term physical and cognitive functioning, mental health, and well-being outcomes. During enrollment and at 12 months, patients will complete the SDOH survey, Clinical Assessments, and PROMs. The study will employ statistical analysis to explore the correlations between PROMs, SDOH, and clinical assessments. The study is ongoing, and results have yet to be finalized. The study's impact lies in providing a comprehensive understanding of AE patients' long-term unmet needs and outcomes, informing the development of targeted interventions, and serving as a foundation for future AE clinical trials.

Presenter Name: Erena Kolb

Presentation Type: Poster
Presentation Format: In Person
Presentation #86
College: Medicine
School / Department: Neurology
Research Mentor: Ka-ho Wong
Date | Time: Thursday, Aug 3rd | 9:00 AM