Epilepsy Emergency Department High Utilizer Program

We believe that there are many reasons that people with epilepsy get their health care through the emergency department (ED) instead of through primary care or neurology. Our goal is to create program that will address these reasons. The creation of this program will be informed by use of the Grady electronic health records (EHR). We will use the EHR to describe people with epilepsy coming the Grady ED at a high frequency. We create a profile of these patients by examining their demographics and social determinants of health information in their EHR (Aim 1). We will then use that information to create a culturally and medically appropriate program for people with epilepsy (Aim 2). Next, we will test the new program, the Epilepsy Emergency Department High Utilizer Program (Aim 3). We believe this program may improve three things. It will first improve access to care by epilepsy and mental health doctors, and reduce ED visits. It may also help people to manage their triggers, track seizures, and take their medicines on time. And last, we believe it may improve seizure frequency and quality of life for people that are underserved in health care. With the lessons learned from the new program, we will explore ways to sustain the program at Grady and expand it to other health care facilities (Aim 4).

Study Overview

• Status: Enrolling by invitation
• Conditions: Epilepsy; Uncontrolled Seizures
• Intervention / Treatment: Behavioral: CHW-Led Transition-of-Care Intervention

• Study Type: Observational
• Enrollment (Estimated): 15

Contacts and Locations

Study Locations

• United States
  • Georgia
    • Atlanta, Georgia, United States, 30310
      • Morehouse School of Medicine

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: No

• Sampling Method: Non-Probability Sample

Study Population

The study population includes adult women with a confirmed diagnosis of epilepsy who are high utilizers of emergency department services at Grady Health System. Participants are enrolled through the Transition of Care (TOC) ED High Utilizer Program and have a history of frequent seizure-related ED visits. The study focuses on Black and Hispanic women residing in the Atlanta metropolitan area.

Description

Inclusion Criteria:

• Adult women aged 18 years or older
• Confirmed diagnosis of epilepsy documented in the electronic health record (EHR)
• Enrolled in the Grady Health System Transition of Care (TOC) ED High Utilizer Program
• History of three or more seizure-related emergency department visits within the past 12 months
• Self-identify as Black or Hispanic
• Reside in the Atlanta metropolitan area with intent to remain for at least 12 months
• Have access to a working phone for follow-up communication

Exclusion Criteria:

• No confirmed epilepsy diagnosis (e.g., non-epileptic seizures)
• Younger than 18 years of age
• Not identified as a high ED utilizer for seizure-related care
• Unable to provide informed consent due to cognitive impairment or psychiatric instability
• Regularly taking anti-epileptic medications with established adherence
• Scheduled neurology follow-up within 14 days of discharge or consistent primary care follow-up
• Complex medical conditions that would limit participation in outpatient follow-up
• Non-English speaking
• Pregnant

Study Plan

How is the study designed?

Number of groups / cohorts

1

Cohorts and Interventions

Group / Cohort

Intervention / Treatment

CHW-Led Transition-of-Care Intervention; This study evaluates a community health worker (CHW)-led transition-of-care intervention for adults with epilepsy who are high utilizers of emergency department services. Participants are enrolled following identification through the Grady Health System Transition of Care (TOC) ED High Utilizer Program. Participants receive ongoing support from a trained CHW over a 9-12 month period. The intervention includes regular home visits and phone follow-up to support epilepsy self-management, including education on seizure recognition, medication adherence, identification of seizure triggers, and reinforcement of treatment plans. The CHW provides care coordination by assisting with appointment scheduling, facilitating communication with healthcare providers, and supporting linkage to neurology, primary care, behavioral health, and community-based services. The intervention also addresses social determinants of health, including transportation, housing, and access to resources that may impac

Behavioral: CHW-Led Transition-of-Care Intervention; Participants receive a community health worker (CHW)-led transition-of-care intervention for adults with epilepsy who frequently use emergency department services. Over 9-12 months, the CHW provides home visits and phone follow-up to support seizure self-management, medication adherence, and care coordination. The CHW assists with appointment scheduling, connects participants to healthcare and community resources, and addresses social needs such as transportation and access to care. The goal is to improve continuity of care and reduce emergency department utilization.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Emergency Department Utilization	Reduced emergency department visits	Baseline to 9-12 months post-enrollment

Collaborators and Investigators

• Sponsor: Morehouse School of Medicine
• Collaborators: UCB Pharma; NYU Langone Health; Emory University; Grady Health System; Epilepsy Foundation
• Investigators: Principal Investigator: Rakale Quarells, PhD, Morehouse School of Medicine

Study record dates

Study Major Dates

• Study Start (Actual): May 1, 2026
• Primary Completion (Estimated): December 1, 2026
• Study Completion (Estimated): December 1, 2026

Study Registration Dates

• First Submitted: June 17, 2026
• First Submitted That Met QC Criteria: June 17, 2026
• First Posted (Actual): June 23, 2026

Study Record Updates

• Last Update Posted (Actual): June 23, 2026
• Last Update Submitted That Met QC Criteria: June 17, 2026
• Last Verified: May 1, 2026

More Information

Terms related to this study

• Keywords: Epilepsy; Multidisciplinary care; Integrated care; Community Health Worker; Underserved populations; Social determinants of health; Care coordination; Uncontrolled seizured; Frequent ED use; High utilizers; African American / Black; Transitions of Care Program
• Additional Relevant MeSH Terms: Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Epilepsy
• Other Study ID Numbers: 12345 (Danish Center for Healthcare Improvements); FY2025-56 (Other Grant/Funding Number: UCB Pharma)

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: YES
• IPD Plan Description: De-identified individual participant data will include demographic characteristics, clinical variables (e.g., seizure frequency, emergency department utilization, medication adherence), and participant-reported outcomes related to epilepsy self-management, quality of life, and behavioral health measures collected during the study period.
• IPD Sharing Time Frame: De-identified individual participant data (IPD) and supporting documents will be available beginning 6 months after publication of primary study results and will remain available for up to 5 years following publication.
• IPD Sharing Access Criteria: De-identified IPD and supporting documents will be available to qualified researchers upon reasonable request. Requests must include a brief proposal outlining the intended use of the data. Access will be granted following review and approval by the study team and institution. Data will be shared under a data use agreement to ensure protection of participant privacy and confidentiality. Access will be provided through secure data transfer methods.
• IPD Sharing Supporting Information Type: STUDY_PROTOCOL; SAP; ICF

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No