Authors :
Presenting Author: Kathleen M. Farrell, MB BCh BAO – Epilepsy Foundation
Jhansi Anjana Rayapureddy, MS – Massachusetts General Hospital
Rebeka Bustamante Rocha, MD – Massachusetts General Hospital; Harvard Medical School
Aya Elhassan, BS – Massachusetts General Hospital
Lidia M.V.R. Moura, MD, MPH, PhD – Massachusetts General Hospital; Harvard Medical School
Peter Hadar, MD, MS – Massachusetts General Hospital; Harvard Medical School
Timothy Saurer, PhD – Jazz Pharmaceuticals, Inc.
Karthik Rajasekaran, PhD – Jazz Pharmaceuticals, Inc.
Brandy Fureman, PhD – Epilepsy Foundation of America
Rationale:
The Epilepsy Learning Healthcare System (ELHS) network, an Epilepsy Foundation-sponsored initiative, collected standardized outpatient data on > 39,000 people with epilepsy (PWE) across participating centers to drive quality improvement. In collaboration with Jazz Pharmaceuticals, ELHS conducted a retrospective analysis on a de-identified subset of patients with documented use of FDA-approved cannabidiol (CBD; Epidiolex®, 100 mg/mL oral solution) to evaluate real-world data-capture patterns and identify opportunities to enhance learning and optimization of health system infrastructure.
Methods:
Using ELHS registry data from 2019–2025, we identified patients prescribed CBD for ≥ 6 months, confirmed by at least 2 visits. Data were collected via standardized case report forms (CRFs) from 7 ELHS sites. Diagnoses of syndromes and etiologies were assessed from CRFs or from ICD-10 codes when available. A de-identified dashboard was built to visualize demographic and clinical characteristics, including seizure types, syndromes, etiologies, and antiseizure medication (ASM) patterns.
Results:
A total of 202 PWE had a record of using CBD for ≥ 6 months. Among these, 91 were adults with a median age of 33 years, and 111 were pediatric patients with a median age of 11 years. Of the adult PWE, 41 (45%) were female, and 12 (13%) identified as Hispanic, 21 (23%) as non-Hispanic, 54 (59%) as Other, and 4 (4%) declined to specify ethnicity. Of the pediatric PWE, 46 (41%) were female, 47 (42%) were Hispanic, and 64 (58%) were non-Hispanic. Seizure types, per provider report, included 34 (17%) focal, 19 (9%) generalized, and 4 (2%) both. A specific epilepsy syndrome was recorded for 123 (61%) patients. CRF-based etiology data were limited: 2 (< 1%) were genetic/presumed genetic, 3 (1%) structural, and 3 (1%) unknown, with ~97% lacking documented etiology. ICD-10 codes submitted by 5 of 7 sites provided better diagnostic specificity in some cases. For those on CBD ≥6 months, 63 (31%) patients were taking CBD only, 16 (8%) were taking CBD + 1 ASM, 46 (23%) were taking CBD + 2 ASMs, 48 (24%) were taking CBD + 3 ASMs, and 29 (14%) were taking CBD + ≥ 4 ASMs. A subgroup of 106 (52%) patients had a follow-up visit within 6 months, in which CBD treatment was not documented.